bmj open · eva grunfeld, director, knowledge translation research network health services research...

For peer review only

Explaining variation in cancer survival between eleven

jurisdictions in the International Cancer Benchmarking

Partnership: a primary care vignette survey

Journal: BMJ Open

Manuscript ID: bmjopen-2014-007212

Article Type: Research

Date Submitted by the Author: 02-Dec-2014

Complete List of Authors: Rose, Peter; University of Oxford, 2. Department of Primary Health Care Rubin, Greg; Durham University, School of Medicine and Health Perera, Rafael; University of Oxford, Primary Health Care

Almberg, Sigrun; Norwegian University of Science and Technology, Department of Cancer Research and Molecular Medicine, Faculty of Medicine Barisic, Andriana; Cancer Care Ontario, Department of Prevention and Cancer Control Dawes, Martin; University of British Columbia, Department of Family Practice Grunfeld, Eva; University of Toronto, Department of Family and Community Medicine Hart, Nigel; Queen's University Belfast, School of Medicine, Dentistry and Biomedical Sciences - Centre for Public Health Neal, Richard; Bangor University, North Wales Centre for Primary Care

Research Pirotta, Marie; University of Melbourne, General Practice and Primary Care Academic Centre Sisler, Jeff; University of Manitoba, Department of Family Medicine Konrad, Gerald; University of Manitoba, Department of Family Medicine Toftegaard, Berit; Aarhus University, Research Unit for General Practice, Department of Public Health Thulesius, Hans; Kronoberg County Research Council, Family Medicine, Department of Clinical Sciences Vedsted, Peter; Aarhus University, Research Unit for General Practice, Department of Public Health

Young, Jane; University of Sydney, Cancer Epidemiology and Services Research (CESR) Hamilton, Willie; University of Exeter Medical School, Primary Care Diagnostics ., ICBP Module 3 Working Group; ICBP Module 3 Working Group, ICBP Module 3 Working Group

<b>Primary Subject Heading</b>:

General practice / Family practice

Secondary Subject Heading: Health policy, Health services research

Keywords: HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Health policy < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, International

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Explaining variation in cancer survival between eleven jurisdictions in the International Cancer

Benchmarking Partnership: a primary care vignette survey

Corresponding author - Peter W Rose, Department of Primary Care Health Sciences, University of

Oxford, New Radcliffe House, 2nd Floor, Radcliffe Observatory Quarter, Woodstock Road, Oxford,

OX2 6GG, United Kingdom, [email protected], 07738 587 370

Greg Rubin, Professor of General Practice and Primary Care, Wolfson Research Institute, Queen's

Campus, Durham University, Stockton on Tees, TS17 6BH, United Kingdom, [email protected]

Rafael Perera-Salazar, Department of Primary Health Care Sciences, University of Oxford, New

Radcliffe House, 2nd Floor, Radcliffe Observatory Quarter, Woodstock Road, Oxford, OX2 6GG,

United Kingdom, [email protected]

Sigrun Saur Almberg, Department of Cancer Research and Molecular Medicine, Faculty of Medicine,

Norwegian University of Science and Technology (NTNU), N-7491 Trondheim, Norway,

[email protected]

Andriana Barisic, Research Associate, Department of Prevention and Cancer Control, Cancer Care

Ontario, 620 University Avenue, Toronto, Ontario, M5G 2L7, Canada,

[email protected]

Martin Dawes, Head, Department of Family Practice, David Strangway Building, University of British

Columbia, 5950 University Boulevard, Vancouver, British Columbia, V6T 1Z3, Canada,

[email protected]

Eva Grunfeld, Director, Knowledge Translation Research Network Health Services Research Program,

Ontario Institute for Cancer Research; Professor and Vice Chair Research, Department of Family and

Community Medicine, University of Toronto, 500 University Avenue, Toronto, Ontario, M5G 1V7,

Canada, [email protected]

Nigel Hart, Clinical Senior Lecturer, School of Medicine, Dentistry and Biomedical Sciences - Centre

for Public Health, Queen's University Belfast, University Road Belfast, BT7 1NN, United Kingdom,

[email protected]

Richard D Neal, Professor of Primary Care Medicine and Director, North Wales Centre for Primary

Care Research, Bangor University, Gwenfro Units 4-8, Wrexham Technology Park, Wrexham, LL13

7YP, United Kingdom, [email protected]

Marie Pirotta, Primary Health Care Research Evaluation and Development Senior Research Fellow,

Department of General Practice, 200 Berkeley Street, Carlton Victoria 3053, Australia,

[email protected]

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Jeffrey Sisler, Associate Dean, Division of Continuing Professional Development and Associate

Professor, Department of Family Medicine, University of Manitoba, 727 McDermot Avenue,

Winnipeg, Manitoba, R3E 3P5, Canada, [email protected]

Gerald Konrad, Associate Professor, Department of Family Medicine, University of Manitoba 5-400

Tache Avenue, Winnipeg, Manitoba, Canada, [email protected]

Berit Skjødeberg Toftegaard, PhD Research Fellow Research, Unit for General Practice, Department

of Public Health, Aarhus University, Bartholins Allé 2, 8000 Aarhus C, Denmark,

[email protected]

Hans Thulesius, Associate Professor of Family Medicine, Department of Clinical Sciences, Kronoberg

County Research Council, Box 1223, 351 12 Växjö, Sweden, [email protected]

Peter Vedsted, Professor, Research Unit for General Practice, Department of Public Health, Aarhus

University, Bartholins Allé 2, 8000 Aarhus C, Denmark, [email protected]

Jane Young, Professor in Cancer Epidemiology, Public Health, School of Public Health, D02-QE11

Research Institute for Mothers and Infants, The University of Sydney, 2006, Australia,

[email protected]

William Hamilton, University of Exeter Medical School, College House, St Luke's Campus, Magdalen

Road, Exeter, EX1 2LU, United Kingdom, [email protected]

The ICBP Module 3 Working Group* (See Appendix A)

Word count: 3627

Abbreviations: International Cancer Benchmarking Partnership (ICBP), Primary care practitioners

(PCP), Positive Predictive Value (PPV)

Keywords: Survey, primary care, cancer, diagnosis, investigations,

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ABSTRACT

Objectives

The International Cancer Benchmarking Partnership (ICBP) is a collaboration between six countries

and 12 jurisdictions with similar primary care led health services. This study investigates factors that

may contribute to cancer survival differences across these jurisdictions.

Design

A validated survey set out in two parts: direct questions on primary care structure and practice

relating to cancer diagnosis, and clinical vignettes, assessing management of scenarios relating to

the diagnosis of lung, colorectal or ovarian cancer.

Participants

2795 primary care physicians (PCPs) in 11 jurisdictions: New South Wales and Victoria (Australia),

British Columbia, Manitoba, Ontario (Canada), England, Northern Ireland, Wales (United Kingdom),

Denmark, Norway, Sweden.

Primary and secondary outcome measures

Analysis compared the cumulative proportion of PCPs in each jurisdiction opting to investigate or

refer at each phase for each vignette with 1 year survival and conditional 5 year survival rates for the

relevant cancer and jurisdiction. Logistic regression was used to explore whether PCP characteristics

or system differences in each jurisdiction were correlated with readiness to investigate.

Results

Four of five vignettes showed a statistically significant correlation (p<0.05 or better) between

readiness to investigate or refer to secondary care at the first phase of each vignette and cancer

survival rates for that jurisdiction. No consistent associations were found between readiness to

investigate and selected PCP demographics, practice or health system variables.

Conclusions

We demonstrate a correlation between the readiness of PCPs to investigate symptoms indicative of

cancer and cancer survival rates, one of the first possible explanations for the variation in cancer

survival between ICBP countries. No specific health system features consistently explained these

findings. Some jurisdictions may consider lowering thresholds for PCPs to investigate for cancer –

either directly, or by specialist referral to improve outcomes.

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ARTICLE SUMMARY

Strengths and limitations of this study:

• A novel, large and logistically complicated study using a validated survey

• Data was analysed from 2795 PCPs across 11 jurisdictions

• Response rates were sub-optimal and respondents were not totally representative of the

PCPs in all jurisdictions

• It is difficult to assess the effect of these limitations on the interpretation of results but

sensitivity analyses and the literature suggest it would not be large

Funding: This work was supported by Canadian Partnership Against Cancer; Cancer Care Manitoba;

Cancer Care Ontario; Cancer Council Victoria; Cancer Institute New South Wales; Danish Health and

Medicines Authority; Danish Cancer Society; Department of Health, England; Department of Health,

Victoria; Northern Ireland Cancer Registry; The Public Health Agency, Northern Ireland; Norwegian

Directorate of Health; South Wales Cancer Network; Swedish Association for Local Authorities and

Regions; Tenovus; British Columbia Cancer Agency; Public Health Wales and the Welsh Government

Competing Interests: WH is the clinical lead for the ongoing revision of the NICE 2005 guidance on

investigation of possible cancer, CG27. His contribution to this article is in a personal capacity, and is

not to be interpreted as representing the view of the Guideline Development Group, or of NICE

itself. The authors declared no conflicts of interest.

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INTRODUCTION

Significant differences in cancer survival have been demonstrated between countries with similar

health systems[1]. Poor outcomes may arise from late presentation, diagnostic delays and treatment

differences, or combinations of these[1-6]. Lengthened time between first presentation to medical

care and diagnosis (the diagnostic interval)[7] are associated with poorer outcomes[8-10]. Detailed

knowledge about how the diagnostic interval is managed in health systems may explain these

differences in survival.

The International Cancer Benchmarking Partnership (ICBP) is a collaboration across six countries

(Australia, Canada, Denmark, Norway, Sweden and the United Kingdom) and 12 jurisdictions of

comparable wealth and universal access to health care, established to examine international

differences in cancer outcomes and identify possible causes. Cancer survival is higher in Australia,

Canada, and Sweden, intermediate in Norway and lower in Denmark and the UK [1]. Differences

between the countries in the proportion diagnosed with the cancer at an early stage, suggest that

differences in the period prior to diagnosis contribute to the international variation in cancer

survival, along with other potential factors, such as access to treatment and the quality of

treatments[2-6].

Public awareness of signs and symptoms and beliefs about cancer appear to be quite similar across

jurisdictions and are therefore unlikely to account for much of the variation seen between countries.

However, differences in perceived barriers to seeing the GP have been reported[11]. Differences in

the way cancer symptoms are recognised and managed in primary care may contribute to the

observed survival differences. For example, European inter-country differences in clinical diagnostic

practice have been reported for gastrointestinal disorders[12]. A stronger ‘gatekeeper’ role –

whereby primary care practitioners (PCPs) manage entry to specialist care and investigations – is

also associated with worse cancer survival[13]. This ‘gatekeeper issue’ is exemplified by the finding

that higher rates of endoscopy referrals within individual UK general practices are associated with a

lower mortality from oesophago-gastric cancer[14].

The aims of this study were to describe the readiness of PCPs to consider investigation or referral for

symptoms possibly indicative of cancer, and to relate this to international differences in primary care

structure and practice. Our hypothesis was that there is a positive correlation between the

proportion of PCPs who would investigate a specific symptom set for cancer and survival rates (for

the given cancer) across jurisdictions. We also investigated whether the readiness of PCPs to

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investigate these cases could be explained by differences in primary care structure or PCP

characteristics.

METHODS

We conducted an international vignette survey amongst a sample of PCPs in participating

jurisdictions.

Survey development

We developed an online survey of PCPs exploring differences in their behaviours, attitudes,

knowledge and skills relating to cancer diagnosis. This was validated, initially in England and then in

all jurisdictions. This process has been described elsewhere[15].

Structure

The survey was in two parts: direct questions consisting of demographic details of the respondents

and questions relating to service provision, access to investigations and waiting times following

secondary care referrals; vignettes on management choices for a patient presenting with symptoms

suggestive of either lung (two vignettes), colorectal (two vignettes) or ovarian cancer (one vignette).

Respondents were randomly presented with two vignettes (of different cancer sites), and were

asked to complete the survey relating to their own practice rather than perceived best practice.

Respondents were aware the survey was part of a study linked to cancer.

Each vignette had two or three phases: phase one represented the first patient presentation; phases

two and three represented subsequent visits, where the patient’s symptoms had developed; each

phase had a pre-defined positive predictive value (PPV) for the cancer based on previous work to

ensure a defined increase in cancer risk at each phase (Table 1)[16-18]. Respondents were not

informed of the PPV for each set of symptoms and signs in the survey. However specifying the PPVs

in the analysis at each phase enabled a comparison of the readiness to act both within vignettes and

between vignettes of the same cancer. The response of primary interest was opting to identify

possible cancer either by referral to secondary care or by undertaking a definitive diagnostic

investigation in primary care: requesting either of these ended that vignette. The definitive tests

were determined by an expert panel and included chest Xray or Lung CT for lung vignettes,

colonoscopy or abdominal CT for colorectal vignettes, abdominal CT or abdominal or trans-vaginal

ultrasound for the ovarian vignette[15].

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The final survey

The survey was completed in 11 jurisdictions: New South Wales and Victoria (Australia), British

Columbia, Manitoba, Ontario (Canada), England, Northern Ireland, Wales (United Kingdom),

Denmark, Norway, Sweden.

Each jurisdiction decided on a method of sampling and approach to potential participants (by post or

email), depending on local conditions and the availability of databases with PCP contact details and

participation incentives (Supplementary Table 1). All surveys were completed online.

Participants

Participants were PCPs working predominantly in clinical practice, including locums and those

working in ‘out-of-hours’ services: retired PCPs, and those in training were not eligible. Considering

all jurisdictions, the online surveys were completed between May 2012 and July 2013; the start

dates and end dates in each jurisdiction varied.

The representativeness of each sample was assessed by comparing gender, age and place of

qualification between respondents and data for all PCPs in each jurisdiction.

Sample size

Each jurisdiction aimed to recruit at least 200 respondents. This provided a 95% confidence interval

(CI) +/- 7% for equally distributed responses (e.g. 50% responding ‘yes’), and +/- 6% CI for less

equally distributed responses (e.g. 20% responding ‘yes’).

Analysis

Direct questions, relating to demographics and primary care structure factors, were analysed using

descriptive statistics. The questions relating to average waiting times for tests and results were

analysed by estimating the mean time from ordering a test to receiving the results by using the mid-

point of each waiting time category.

Analysis of the vignettes was undertaken in two stages. Our hypothesis was explored by comparing

the cumulative proportion of PCPs opting to investigate or refer at each phase for each vignette

using 1 year survival rates for the relevant cancer.

Linear correlations were estimated between the proportions opting to investigate at each phase and

survival rates.

Weighted Regression

When comparing between jurisdictions, weighted linear regression was used to adjust for different

sample sizes in each jurisdiction, based on the total number of respondents for each vignette. A

regression model was fitted for each phase and each vignette using 1 year survival as the outcome

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with the number of PCPs acting at each phase as a single explanatory variable. The weights were the

inverse of the variance of the proportion at a given phase for each jurisdiction. No weighted

regression models were possible for jurisdictions where all PCPs had opted to investigate at a given

phase.

Logistic Regression – Multilevel model

Weighted regression did not allow us to explore if individual PCP characteristics and access to tests

(within each jurisdiction) were associated with opting to investigate. Therefore, in the second stage

of the analysis, we fitted separate multilevel logistic regression models using opting to investigate as

the outcome and estimated the association with (a) PCP characteristics, (b) access to tests, (c)

jurisdiction level survival (1 and conditional 5 year) as reported by Coleman and colleagues [1] and

(d) a full model including PCP characteristics and access to tests. This last model only included those

variables significantly associated in models (a) and (b) to reduce the chances of identifying spurious

associations.

We identified variables that might influence opting to investigate in models (a) and (b) as well as the

expected direction of effect (Supplementary Table 2). As with the weighted regression, analyses

were performed by vignette as explanatory variables were different for each cancer. These variables

are not independent and therefore some basic model selection (based on statistical significant

associations p-value <0.05) was used to determine the choice of variables included in model (c).

Sensitivity analyses

Previous studies comparing survival rates between England or the UK to other countries suggested

that later diagnosis could be a factor contributing to poorer outcomes: thus, opting to investigate or

refer later in the process of clinical presentation would contribute to the delay in diagnosis in poorer

performing jurisdictions[1,19]. Both 1 year survival and 5 year survival conditional on surviving at

least 1 year (conditional 5 year survival) reflect a longer diagnostic interval due to delay in primary

care, but neither are a perfect measure of this[19]. We chose 1 year survival as the primary outcome

measure as we anticipated that it more directly reflects activity in primary care. We then undertook

sensitivity analysis using conditional 5 year survival to check that our findings were also confirmed

using this outcome.

Denmark has substantially changed its primary care referral procedures since the latest reported

comparative survival figures[20,21]. This change in procedures was apparent in the results with

Denmark appearing as an outlier in vignettes 3 and 4 related to the diagnosis of colorectal cancer;

analyses of these two vignettes were repeated excluding Denmark.

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Australia oversampled rural PCPs to ensure the views of this minority were adequately represented.

A post hoc sensitivity analysis was undertaken to address this: we formed a data set with a sample of

rural PCPs so that this was representative of the rural/urban split in Australia and compared these

with the results of the whole data set.

Governance

At all stages the methodology, sampling and analysis were discussed with four separate working

groups: the module lead of each jurisdiction, the Programme Board overseeing the whole ICBP

programme, an academic steering group comprising the module chair and three academic PCPs with

an interest in cancer (PWR, GR, WH, PV) and an academic reference group comprising primary care

academics from within and outside ICBP jurisdictions.

RESULTS

The online survey was completed by 2795 PCPs. Almost all jurisdictions received at least 200

responses; only the Northern Ireland response (the smallest total population) was substantially

below this target. Crude response rates (most jurisdictions stopped the survey when the sample size

was reached) varied between jurisdictions from 5.5% (England) to 45.6% (Manitoba) (Appendix

Table 1).

Characteristics of respondents are summarised in Table 2. There were significantly more female

PCPs in the samples from Victoria, Ontario and British Columbia and fewer from Norway, when

compared with their national data. The samples from England, Wales, Northern Ireland, New South

Wales, Victoria, Sweden, Norway and Ontario had fewer doctors who had qualified outside the

country and Manitoba had more (for Canadian provinces and Australian states this meant training

outside Canada and Australia respectively). Respondents from England and Norway were older

whereas respondents from New South Wales and all Canadian provinces were younger compared

with national data.

Vignette Results

In four of the five vignettes there was a statistically significant correlation (p<0.05) between opting

to investigate for cancer in a jurisdiction at phase one and the cancer survival in that jurisdiction

(Figure 1). Only phase one results are presented; nearly all PCPs had taken action to refer or

investigate for a potential diagnosis of cancer by the end of phase 2.

Vignette 1 (lung cancer) was the only vignette that did not show any statistically significant

correlations. In this vignette, the estimated positive predictive value (PPV) for lung cancer for the

symptoms presented at phase one was 0.9% (although this was not explicitly presented in the

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vignette) and yet the range of respondents opting to investigate at this phase between jurisdictions

was 40% to 80% (Table 1). The estimated PPV for lung cancer in phase one of vignette 2 was higher

at 3.6% and yet the range of respondents opting to investigate at this phase was 4% to 52%.

The lung and ovarian cancer vignettes were usually completed by the use of a test (chest X-Ray for

lung cancer, ultrasound for ovarian cancer) rather than by specialist referral. In contrast, more than

half of the colorectal vignettes were completed by referral.

Consistent with the correlation results, statistically significant associations were found using

weighted regression between the one year survival and readiness to investigate at phase one for

vignettes 2, 3, 4 (after Denmark was excluded) and 5. For the sensitivity analysis based on the

conditional 5 year survival, this association was found at phase one for vignettes 2, 3, and 4 (after

Denmark was excluded) (Table 1).

Logistic Regression analysis

No factors (PCP characteristics, access to tests or length of time from ordering test to receiving

results) showed a consistent association with the readiness to investigate. The only two PCP

characteristics associated with the outcome were that doctors who trained outside their jurisdiction

were more likely to refer or investigate cases earlier in vignettes 3 and 4 (both colorectal) and older

doctors were more likely to refer or investigate cases earlier in vignette 4. The former association

was investigated further using data from Manitoba (the only jurisdiction to have more doctors

trained outside of the jurisdiction); within this dataset there was no association found between

place of training and readiness to investigate. The latter association was no longer statistically

significant when excluding Denmark as part of the sensitivity analysis; while training outside was still

significant (data not shown).

Similarly, adjusting for rural/urban split amongst Australian PCPs did not significantly affect the

results.

Direct questions – access to diagnostics and secondary care advice

Similarities and differences in primary care system factors are reported between jurisdictions.

Reported direct access, to blood tests for cancer diagnosis, plain X-rays and ultrasound was greater

than 70% across all jurisdictions (Table 3). Reported access to other tests was variable: direct access

to endoscopy was less common in Canada. The United Kingdom and Denmark had comparatively

low levels of direct access to CT and MRI scanning.

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With the exception of plain X-rays, the total wait from request to receipt of report for imaging or

endoscopy was reported to be over four weeks in most jurisdictions and over 12 weeks in some.

Total wait between a referral for a suspected cancer and a patient’s first specialist appointment was

between two and three weeks for all jurisdictions (Table 4). Most PCPs reported they could expedite

access to tests if cancer was suspected. With the exception of the United Kingdom, most PCPs

reported ready access to secondary care advice about investigation or referral of suspected cancer

from a specialist (Table 5).

While there was variation across jurisdictions in terms of access to diagnostics and secondary care

advice, none of these factors were associated with PCP readiness to act.

DISCUSSION

Principal findings

Using an online survey in 11 jurisdictions, we have demonstrated a correlation which suggests a

relationship between the readiness of PCPs to investigate or refer for suspected cancer and cancer

survival in each jurisdiction. This is the first time that readiness to investigate for cancer – either

directly or by referral to secondary care – has been shown to correlate with cancer survival. Evidence

suggests that variations between health care systems have an impact on health outcomes[22].

There is significant variation between jurisdictions in the access that PCPs have to diagnostic tests.

Whether greater access to tests improves outcomes depends on the sensitivity of the test and how

the waiting time for test results compares with the waiting time if a referral is made. PCPs may not

be aware of the fastest way to diagnose cancer: referral or primary care investigation. Our data

indicate significantly long waits in some jurisdictions for the results of tests undertaken in primary

care. However access to tests was not associated with readiness to investigate or refer. Further

research is required in this complex area.

Strengths and weaknesses

This was a novel, large, logistically complex survey using a validated tool in 11 jurisdictions with

primary care based health systems. Once a respondent engaged in the online survey the proportion

who went on to complete it was high. The vignettes had face validity; they directly reflected clinical

practice and were universally applicable[15]. Moreover, since the study was completed, the

vignettes have been adopted as part of a GP education programme in the UK in light of their

applicability to primary care. There is evidence that using vignettes in a survey correlates well to

clinical practice[23]. Vignettes have also been used recently in a similar context[24]. While surveys

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using hypothetical vignettes are not ideal we chose vignette based surveys as a cost effective way to

maintain consistency across all jurisdictions.

The poor response rates in some jurisdictions and the lack of representativeness of the respondents

in several jurisdictions (based on demographic data) are weaknesses. It is difficult to assess whether

and by how much these two factors would affect the interpretation of the results. Two jurisdictions

achieved a response rate over 25%; in other jurisdictions response rates ranged from 5.5% to 18.7%.

A significant obstacle to achieving better response rates in some jurisdictions was limited availability

of comprehensive and up to date email addresses for PCPs. The response rates achieved are broadly

in line with lower response rates for online surveys generally[25]. Furthermore, response rates in

physician surveys have been declining in recent years[26].

Those responding were not wholly representative of their local PCP population, but the differences

in gender and country of qualification were bidirectional. It is unlikely that selection bias will operate

in different directions in each country i.e. that we should have the highest investigating or referring

doctors in some and the lowest in others. If we hypothesized that those participating were the very

best and most interested GPs, they would be more likely to investigate or refer earlier, irrespective

of jurisdiction, and so these results would be likely to underestimate true differences between

jurisdictions.

In jurisdictions where respondents were less representative of the local PCP population, respondents

were in general more likely to be women, to have qualified in that country and to be younger.

Although training outside the country was associated with opting to act earlier in the colorectal

vignettes, sensitivity analysis using Manitoba data suggested this is unlikely to have substantially

affected overall results. A systematic review of studies of primary care referrals suggested that less

than 10% of the observed variation in referral rates could be accounted for by practice and GP

characteristics[27]. It is therefore unlikely that the minor unrepresentativeness of some samples has

materially altered the findings.

Earlier diagnosis could lead to perceived better outcomes through two mechanisms: earlier stage at

diagnosis or lead time bias. Our correlations were significant for both one year and conditional five

year survival, suggesting that lead time bias is less of an issue.

The vignettes all described hypothetical patients with symptoms which have been shown to be

significantly associated with the given cancer.

The survey was conducted in 2012/13 and therefore reflects clinical practice at this time. The latest

comparative survival data for the three cancers in participating jurisdictions is from 2007. The

jurisdictions had no major changes to cancer diagnostic pathways during this time, with the

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exception of Denmark, which in 2009 introduced significant reforms to improve diagnostic access for

PCPs. Consequently, Denmark was often an outlier in the analyses: sensitivity analyses including and

excluding Denmark strengthened our findings.

Comparison with other research

An analysis of the health systems in the ICBP jurisdictions showed few significant differences[28].

Poorer outcomes have been correlated with the strength of the ‘gatekeeping’ role of PCPs in

different health systems[13]: our findings broadly support this. Denmark has deliberately

reorganised cancer diagnostic services to reduce the gatekeeping role by enabling PCPs to undertake

timely investigation of patients with alarm well as vague symptoms[21]Our results suggest that

Danish PCPs now behave more like PCPs in jurisdictions with better cancer outcomes. Gatekeeping

may encourage PCPs to over-use other diagnostic strategies, such as the ‘test of time’[29] which

could contribute to longer diagnostic intervals. Other possible reasons to account for our results

include PCPs’ knowledge and PCPs’ relationships with specialists.

Implications

In this study PCPs opted to investigate at low levels of risk, possibly reflecting bias because this was a

survey relating to cancer. However, recent work suggests that patients prefer to be investigated

when cancer is a possibility, even at low risk levels[23]. If risk thresholds at which symptoms are

investigated were to be lowered, health economic considerations would need to be taken into

account. The use of risk prediction tools[30,31] may aid PCPs in this respect. Our findings also

suggested that PCPs were not necessarily aware of the positive predictive values of groups of

symptoms. Across all jurisdictions, the speed of referral was inversely related to the PPV for lung

cancer in the two lung vignettes. However, these counterintuitive responses are consistent with

referral guidelines in some of the jurisdictions. Variation in readiness to investigate or refer to

secondary care by PCPs for patients with a differential diagnosis of cancer might explain some of the

variation in cancer survival between ICBP jurisdictions. It is unlikely that a single solution to this

variation will work across all jurisdictions. However, solutions are likely to include initiatives that

empower PCPs toward earlier investigation of cancer and to reduce the barriers that inhibit

specialist referral. Such changes are likely to require changes in local policy leading to increased

access to investigations and diagnostics, more efficient referral pathways and the re-drafting of local

referral guidelines to facilitate referral at risk levels below those currently mandated.

Future research

Future research should investigate which factors do affect the readiness of a PCP to investigate or

refer a patient. While not explored in detail in this study, a range of system factors could be

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influencing how PCPs respond to symptomatic patients; areas for further investigation could include

further research to confirm these findings and additional research to investigate the influence of

clinical guidelines, the comprehensiveness of primary care health systems in each country,

conversion rates of those investigated or referred who are diagnosed with cancer and the nature of

the relationship between primary and secondary care.

Author Contribution Statement: PWR, GR, RPS, SSA, AB, MD, EG, NH, RDN, MP, JS, GK, BST, HT, JY,

WH and the ICBP Module 3 Working Group contributed to the manuscript. PWR wrote the original

manuscript. PWR, GR, RPS, SSA, AB, MD, EG, NH, RDN, MP, JS, GK, BST, HT, JY, WH and the ICBP

Module 3 Working Group contributed to the study design, data collection, data interpretation,

review process; reading and considering the analysis, being involved in discussion and contributing

variously to the iterative writing and commenting process. Every author takes responsibility for the

entire content of the manuscript.

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APPENDIX A: MODULE 3 WORKING GROUP


Ontario, 620 University Avenue, Toronto, Ontario, M5G 2L7, Canada


Columbia, 5950 University Boulevard, Vancouver, British Columbia, V6T 1Z3, Canada

Diana Dawes, Research Associate, Department of Family Practice, David Strangway Building,

University of British Columbia, 5950 University Boulevard, Vancouver, British Columbia, V6T 1Z3,

Canada

Mark Elwood, Vice-President, Family and Community Oncology, BC Cancer Agency; Clinical

Professor, School of Population and Public Health, UBC; Honorary Professor, Department of

Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia

Kirsty Forsdike, Senior Research Assistant, Department of General Practice, 200 Berkeley Street,

Carlton Victoria 3053, Australia


Ontario Institute for Cancer Research; Professor and Vice Chair Research Department of Family and


Canada


for Public Health, Queen's University Belfast 2013, University Road Belfast, BT7 1NN, United

Kingdom

Breann Hawryluk, Project Planning Coordinator, Department of Patient Navigation, Cancer Care

Manitoba, 675 McDermot Street, Winnipeg, Manitoba, Canada


Tache Avenue, Winnipeg, Manitoba, Canada

Anne Kari Knudsen, Administrative leader, Department of Cancer Research and Molecular Medicine,

Norwegian University of Science and Technology, 7489 Trondheim

Magdalena Lagerlund, Department of Learning, Informatics, Management and Ethics, Karolinska

Institute, Berzelius väg 3, Stockholm 171 77, Sweden

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Claire McAulay, Research Officer, Public Health, School of Public Health, D02-QE11 Research

Institute for Mothers and Infants, University of Sydney NSW 2006 Australia

Jin Mou, Postdoctoral Fellow, Department of Family Practice, Research Office, Department of Family

Practice, David Strangway Building, University of British Columbia, 5950 University Boulevard,

Vancouver, British Columbia, V6T 1Z3, Canada



7YP, United Kingdom


Department of General Practice, 200 Berkeley Street, Carlton Victoria 3053, Australia

Jeffrey Sisler, Associate Dean, Division of Continuing Professional Development and Professor,

Department of Family Medicine, University of Manitoba, 727 McDermot Avenue, Winnipeg,

Manitoba, R3E 3P5, Canada

Berit Skjødeberg Toftegaard, PhD Research Fellow, Research Unit for General Practice, Department

of Public Health, Aarhus University, Bartholins Allé 2, 8000 Aarhus C, Denmark

Hans Thulesius, Associate Professor, Lund University, Box 117, SE-221 00 Lund, Sweden


University, Bartholins Allé 2, 8000 Aarhus C, Denmark

David Weller, James Mackenzie Professor of General Practice, Centre for Population Health Sciences,

University of Edinburgh, Doorway 1, Medical Quad Teviot Place, Edinburgh, EH8 9DX, United

Kingdom


Research Institute for Mothers and Infants, The University of Sydney, 2006, Australia

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ACKNOWLEDGEMENTS

Kate Aldersey, Martine Bomb, Catherine Foot, Brad Groves and Samantha Harrison of Cancer

Research UK for managing the ICBP programme. John Archibald at Sigmer Technologies Ltd for

hosting the online survey. Alice Fuller for help with data management. We would also like to

acknowledge and thank our ICBP clinical committee members and working group members in each

jurisdiction who were not part of the central team, but who contributed to the review of our results

and this paper.

Programme Board: Ole Andersen (Danish Health and Medicines Authority, Copenhagen, Denmark),

Søren Brostrøm (Danish Health and Medicines Authority, Copenhagen, Denmark), Heather Bryant

(Canadian Partnership Against Cancer, Toronto, Canada), David Currow (Cancer Institute New South

Wales, Sydney, Australia), Dhali Dhaliwal (Cancer Care Manitoba, Winnipeg, Canada), Anna Gavin

(Northern Ireland Cancer Registry, Queens University, Belfast, UK), Gunilla Gunnarsson (Swedish

Association of Local Authorities and Regions, Stockholm, Sweden), Jane Hanson (Welsh Cancer

National Specialist Advisory Group, Public Health Wales, Cardiff, UK), Todd Harper (Cancer Council

Victoria, Carlton, Australia), Stein Kaasa (University Hospital of Trondheim, Trondheim, Norway),

Nicola Quin (Cancer Council Victoria, Carlton, Australia), Linda Rabeneck (Cancer Care Ontario,

Toronto, Canada), Michael A Richards (Care Quality Commission, London, UK), Michael Sherar

(Cancer Care Ontario, Toronto, Canada), Robert Thomas (Department of Health Victoria, Melbourne,

Australia).

Academic Reference Group:

Jon Emery, Professor of Primary Care Cancer Research, University of Melbourne and Clinical

Professor of General Practice, University of Western Australia, Australia

Niek de Wit, Professor of General Practice, Julius Centre for Health Sciences and Primary Care,

University Medical Centre, Utrecht, Netherlands

Roger Jones, Editor, British Journal of General Practice and Emeritus Professor of General Practice,

King's College, London, United Kingdom

Jean Muris, Associate Professor in Family Medicine, Maastricht University, Netherlands

Frede Olesen, Professor, Research Unit for General Practice, Department of Public Health, University

of Aarhus, Denmark

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Table 1: Summary of the vignettes

Vignette

Cancer

Patient details

Management options Phase 1 Phase 2 Correlation between survival

and referral or test at phase 1

(weighted regression analysis)

Definitive

actions

Non-definitive actions PPV Refer /

Test (%) *

PPV Refer /

Test (%)*

1 year

survival

P value

Conditional 5 year

survival

P value

1 Lung Phase 1 68-year old female, ex-smoker with persistent cough for 3

weeks but no other symptoms, taking ramipril for

hypertension. Ear, throat and chest exams were normal.

Secondary care

referral

Chest x-ray

Chest CT

• Antibiotics

• Oral steroids

• Anti-tussive medicines

• Stop ramipril

• Advise visit to pharmacy to

try remedies there

• Tell her that no action is

needed at this stage

0.9 40-80 3·9 95-100 0.654 0.647

Phase 2 Patient returns after another 3 weeks, saying cough has

persisted and now there are streaks of blood in the sputum.

No weight loss, but a chest examination reveals some

crepitations at the left base. Any tests previously undertaken

were normal.

0.357

(excluding

Denmark)

0.911

(excluding

Denmark)

Phase 3 Patient returns with ongoing symptoms and you decide to

order a chest X-ray. The report says there is mild

cardiomegaly but the lung fields are clear.

2 Lung Phase 1 62 years old man with COPD, a heavy smoker for over 40

years. He presented with respiratory symptoms.

Secondary care

referral

Chest x-ray

Chest CT

• Advise increased use of

salbutamol inhaler

• Antibiotics

• Oral steroids

• Antibiotics and add new

inhaler- steroid or

salmeterol



try remedies there

• Tell him that no action is


3.6 5-50 >10·0 87-100 <0.001 <0.001

Phase 2 Patient returns in 3 weeks, complains of constant ache in left

shoulder. Patient attributes pain to persistent cough; he is

also producing grey coloured sputum in larger quantities

than usual, but no other chest symptoms. No weight loss. On

exam he has still has a bilateral upper lobe wheeze and some

crepitations at the left base. Examination of his shoulder is

normal.

<0.001

(excluding

Denmark)

<0.001

(excluding

Denmark)

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Vignette

Cancer

Patient details




Definitive

actions


Test (%) *

PPV Refer /

Test (%)*

1 year

survival

P value

Conditional 5 year

survival

P value

3 Colorectal Phase 1 43 year old woman with IBS for more than 10 years, but the

IBS has got worse recently. She has abdominal pain every

day, unchanged bowel habit and no other symptoms. She

has no family history of cancer.

Secondary care

referral

Colonoscopy

Abdominal CT

• Prescribe medication for

IBS

• Give dietary advice

• Offer psychological

therapies (counselling and

CBT)



0.7 5-45 1.2 48-89 0.014

0.025

Phase 2 The patient returns to see you. Her recent blood test has

returned a haemoglobin level of 10.5g/dl.

0.003

(excluding

Denmark)

0.002

(excluding

Denmark)

4** Colorectal Phase 1 68 year old man with no relevant medical history. He has

experienced loose stools twice a day, most days for over 4

weeks. He has no other symptoms. Examination incl. rectal

exam was normal.

Secondary care

referral

Colonoscopy

Abdominal CT

• Offer medication e.g.

loperamide, antispasmodic,

analgesia.

• Advice on diet



0.9 20-40 1.9 77-89 0.071

0.093

Phase 2 Any tests selected are negative. Patient returns 2 weeks

later, describing that the diarrhoea remains much the same

but he now also has intermittent sharp abdominal pain.

Abdominal and PR examinations are normal.

0.004

(excluding

Denmark)

0.001

(excluding

Denmark)

Phase 3 All tests are negative. A further two weeks later patient

describes two brief episodes of rectal bleeding (bright red)

two days apart.

5** Ovarian Phase 1 53 year old woman whose last period was 6 months ago. She

had experienced abdominal pain for the last 3 weeks. She

has had no other symptoms and the same sexual partner for

20 years.

Secondary care

referral

Abdominal

ultrasound

Pelvic CT

• Prescribe analgesia

• Prescribe anti-spasmodic

• Undertake investigations

now



0.3 40-75 0.7 68-90 0·007

0.610

Phase 2 All investigations to date have been normal. The patient

presents one month later with urinary frequency. She says

the abdominal pain is still present but comes less often.

Abdominal examination is normal. A urine dipstick for blood,

protein, nitrite, white cells and sugar is negative.

0.009

(excluding

Denmark)

0.744

(excluding

Denmark)

Phase 3 Patient returns 6 weeks later saying pain is worse, she is

passing urine every 3 hours, day and night and has noticed

that her abdomen seems swollen. You examine her abdomen

and it does looks distended but you cannot feel any other

abnormality.

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* Range of respondent who completed the vignette at this stage by referral or undertaking a definitive diagnostic test.

** Stage 3 results not reported as nearly 100% of respondents referred or undertook definitive test by this stage

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Table 2: Representativeness of samples: comparison of respondent characteristics with whole jurisdiction data

Sub-categories ENG WA NI VIC NSW SWE NO DK ONT MAN BC

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al*

Su

rve

y

p v

alu

e

Na

tion

al*

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

N 35527 251 2015 218 1178 130 20360 189 20360 256 5467 199 5373 230 3590 255 12296 610 1323 228 5833 229

(%)

(%) (%) (%) (%) (%) (%) (%) (%) (%) (%)

Male 52.9 41.8

0.1

98

56.0 61.0 0.1

98

0

55.0 56.0 0.8

01

8

61.0 53.0 0.0

03

4

61.0 56.0 0.0

83

9

54.0 53.0 0.8

38

4

58.3 66.5 0.0

13

2

56.4 57.3 0.7

90

2

57.6 51.6 0.0

03

8

62.6 59.2 0.3

32

8

60.6

45.0

<0

.00

01

Female 47.1 58.2 44.0 39.0 45.0 44.0 39.0 47.0 39.0 44.0 46.0 47.0 41.7 33.5 43.6 42.7 42.4 48.4 37.4 40.8 39.4

55.0

Place of

Qualification

Within

jurisdiction

≠77.4 91.2

0.0

00

4

82.0 89.0

0.0

09

6

≠77.4 100.0

<0

.00

01

66.0 74.0

0.0

02

9

66.0 74.0

0.0

08

6

2010:

77.0

89.0

<0

.00

01

61.6 74.8

<0

.00

01

not

available

98.4

74.6 90.1 <

0.0

00

1

53.1 48.7

<0

.00

01

not

available

72.9

Outside

jurisdiction

≠22.6

8.8

18.0 11.0

≠22.6

0.0

34.0

26.0

34.0 26.0

2010:

23.0

11.0

38.4 25.2

1.6

24.7 9.9

46.9 51.3

27.1

Age Bands Under 30 1.0 0.4

0.0

13

1.0 0.0

0.1

27

7

0.1 0.80

0.4

72

<35:

7.0

6.0

0.0

86

4

<35:

7.0

10.0

0.0

46

9

<40®:

7.0

33.0

<0

.00

01

4.6 0.0

<0

.00

01

<34:

0.11

0.4

0.6

52

5

1.7 14.0

<0

.00

01

4.7 7.9

<0

.00

01

<30

1.2 17.9

<0

.00

01

30-44 42.0 14.7 39.0 39.9 40.0 36.9 35-

44®:

20.0

24.0 35-44®:

20.0

24.0 35-

44®:

10.0

9.0 43.3 30.9 35-44:

20.1

18.8 32.2 26.1 31-45®:

33.2

37.3 30-39®:

18.9

21.0

45-54 34.4 13.2 37.0 39.4 35.0 39.2 31.0 36.0 31.0 28.0 28.0 25.0 21.2 19.6 29.2 29.0 28.0 27.8 46-55®:

30.1

33.8 40-49®:

24.4 21.8

55-64 18.4 12.4 20.0 20.2 23.0 20.8 55+:

42.0

34.0 55+®:

42.0

38.0 43.0 26.0 25.5 40.9 40.8 40.4 24.7 23.6 56-64®:

20.6

17.1 50-59®:

29.9 26.6

65+ 4.0 17.9 3.0 0.5 1.9 2.30 12.0 8.0 5.5 8.7 9.6 11.4 13.4 8.5 9.4 3.95 60-69®:

20.7 10.5

unknown 0.1 17.9

70-79®:

4.4 1.3

80+®:

0.6 0.9

Key

®Where age groups sub-groups differ they are marked in bold and italic

*using Australian National statistics

≠ UK naFonal figures used

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Table 3: Direct access* to investigations (%)

Australia Canada Denmark Norway Sweden United Kingdom

NSW Victoria

British

Columbia Manitoba Ontario England

Northern

Ireland Wales

Cancer diagnosis blood tests #

Blood tests 98.0 99.5 81.7 69.3 80.7 89.8 70.9 75.8 94.0 89.0 75.7

95%CI 95.2 to 99.3 96.6 to 100 75.9 to 86.3 62.8 to 75.1 77.2 to 83.7 85.3 to 93.1 64.5 to 76.6 69.1 to 81.4 90.1 to 96.5 81.2 to 93.9 69.3 to 81.1

Endoscopy

Upper GI endoscopy 26.0 66.1 7.4 13.7 19.5 56.5 18.0 46.2 68.1 68.5 66.1

95%CI 20.8 to 31.9 58.9 to 72.8 4.5 to 11.8 9.6 to 18.9 16.4 to 22.9 50.1 to 62.6 13.2 to 23.5 38.9 to 53.2 61.9 to 73.8 59.1 to 77.2 59.3 to 72.2

Flexi sig 17.7 34.9 13.1 13.2 17.7 54.9 16.2 34.2 40.6 14.8 32.3


Colonoscopy 26.4 61.9 7.9 13.2 22.4 52.5 17.1 45.2 33.1 19.8 22.0


Imaging

Xray Whole body^ 99.2 100.0 96.1 92.5 98.0 92.2 74.3 86.4 82.5 89.9 87.6


CT Whole body 99.6 100.0 92.6 86·4 95.1 22.0 73.5 84.3 21.5 27.5 46.3

95%CI 97.5 to 100 97.5 to 100 88.2 to 95.5 81.1 to 90.4 93 to 96.7 17.1 to 27.7 67.2 to 79.0 78.4 to 89.0 16.7 to 27.2 19.6 to 37.0 39.6 to 53.2

MRI Whole body 44.9 54.0 62.0 74·6 91.6 16.9 70.4 68.2 19.9 11.0 31.2

95%CI 38.7 to 51.2 46.6 to 61.2 55.4 to 68.3 68.3 to 80.0 89 to 93.6 12.6 to 22.2 64.0 to 76.2 61.1 to 74.5 15.3 to 25.5 6.1 to 18.8 25.2 to 37.9

Ultrasound Whole body 98.0 98.9 93.0 84·2 95.4 78.2 70.9 82.3 78.1 79.8 71.1


* Direct access: PCP can order the test without specific referral to secondary care

# Survey did not define which specific tests

^ Access to all individual body parts

Note: Exact 95%CI calculated for these figures

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Table 4: Average wait times for tests and results (weeks)


NSW Victoria

British


Northern

Ireland Wales

X-ray

Test 0.56 0.57 0.56 0.55 0.54 0.95 1.37 1.43 0.79 0.91 0.82

Result 0.50 0.51 0.71 0.68 0.57 0.79 0.69 0.67 1.03 1.36 1.28

Total wait 1.06 1.08 1.27 1.23 1.11 1.74 2.06 2.10 1.82 2.27 2.10


CT

Test 0.81 0.82 4·29 4·13 3·01 2.65 3.30 4.07 3.50 5.55 5.38

Result 0.52 0.52 1·02 0·96 0·78 0.98 0.85 1.02 1.39 1.77 1.44

Total wait 1.33 1.34 5·31 5·09 3·79 3.63 4.15 5.09 4.89 7.32 6.82

95%CI 1.24 to 1.42 1.24 to 1.44 4·87 to 5·75 4·69 to 5·49 3·59 to 3·68 3.33 to 3.93 3.88 to 4.43 4·60 to 5.57 4.60 to 5.18 6.57 to 8.07 6.35 to 7.29

MRI

Test 2.39 2.76 12.36 9.10 6.05 5.06 6·13 6.16 4.73 9.04 8.37

Result 0.60 0.56 1.39 1.36 0.88 1.12 1·05 1.24 1.52 2.55 1.56

Total wait 2.99 3.32 13.75 10.46 6.93 6.18 7·18 7.40 6.25 11.60 9.93

95%CI 2.64 to 3.34 2.84 to 3.80 13.12 to 14.38 9.82 to 11.09 6.61 to 7.25 5.66 to 6.69 6·72 to 7·63 6·73 to 8·06 5.90 to 6.60 10.63 to 12.57 8.32 to 30.55

Ultrasound

Test 1.11 1.26 4.30 5.88 1.80 2.71 3.99 3.76 3.73 6.38 6.08

Result 0.52 0.53 0.88 1.04 0.65 0.84 0.78 0.93 1.19 1.62 1.31

Total wait 1.63 1.79 5.18 6.92 2.46 3.55 4.77 4.69 4.93 8.00 7.39

95%CI 1.50 to 1.76 1.56 to 2.02 4.71 to 5.66 6.36 to 7.48 2.32 to 2.59 3.23 to 3.88 4.39 to 5.14 4.25 to 5·13 4.64 to 5.21 7.35 to 8.66 6.90 to 7.88

Upper GI endoscopy

Test 5.56 5·11 9.05 9·35 6·01 2·45 5.95 4.71 3.99 8.37 8.17

Result 1.38 0·83 1.49 1·82 1·36 0·77 0.95 1.46 1.35 1.58 1.67

Total wait 6.94 5·94 10.54 11·17 7·37 3·22 6.90 6.17 5.34 9.95 9.84


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NSW Victoria

British


Northern

Ireland Wales

Flexi sigmoidoscopy

Test 5.26 5.06 9.19 9.01 5.79 2.39 6·28 5·55 4·15 8·21 8.20

Result 1.38 0.87 1.55 1.91 1.34 0.76 0·94 1·54 1·46 2·04 1.66

Total wait 6.64 5.93 10.74 10.91 7.14 3.15 7·22 7·09 5·61 10·25 9.86

95%CI 6.06 to 7.22 5.21 to 6.65 10.03 to 11.44 10.20 to 11.63 6.75 to 7.48 2.89 to 3.41 6·76 to 7·65 6·53 to 7·65 5·26 to 5·95 9·35 to 11·15 9.21 to 10.50

Colonoscopy

Test 5.78 5.36 10.48 10.16 6.70 2.51 6.69 6.25 4.15 8.69 9.06

Result 1.38 0.84 9.61 1.91 1.37 0.78 0.98 1.54 1.56 2.00 1.70

Total wait 7.16 6.20 20.09 12.07 8.08 3.29 7.67 7.79 5.71 10.69 10.76


Average wait time between a referral and first specialist appointment (Days)

Not available Not available 15.44 19.21 15.05 4.90 13.70 14.50 10.09 13.53 18.05

95%CI Not available Not available 14.10 to 16.78 17.56 to 20.87 14.25 to 15.85 4.78 to 5.32 12.72 to 14.68 13.32 to 15.68 9.91 to 10.28 12.62 to 14.44 16.75 to 19.35

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Table 5: Access to advice and faster tests (%)


NSW Victoria

British


Northern

Ireland Wales

% agree /

strongly

agree

Can get

specialist

advice within

48 hours

Investigations 67.4 61.1 67.7 47.8 51.1 80.4 81.8 84.4 31.8 27.6 28.4


Referrals 59.5 64.3 62.5 45.2 44.2 80.7 73.9 79.8 35.8 27.5 25.7


Can arrange

faster access

to tests, if

suspicious

87.4 84.7 53.3 64·5 75.5 92.5 82.6 78.8 66.2 70.7 56.0


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Figure 1: Scatterplots of vignette results and weighted regression analysis

B = 5.31 Std. Error = 11.465 p-value = 0.654 B = -5.874 Std. Error = 12.382 p-value = 0.647

B = 37.544 Std. Error = 5.963 p-value = <0.001 B = 31.916 Std. Error = 5.653 p-value = <0.001

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B = 23.832

Std. Error = 7.879 p-value = 0.014 B = 12.923 Std. Error = 4.818 p-value = 0.025

Excluding Denmark (as an outlier)

B = 30.433


B = 41.077


Excluding Denmark (as an outlier)

B = 70.084


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B = 28.227


Key

BC British Columbia

D Denmark

E England

M Manitoba

NO Norway

NI Northern Ireland

NSW New South Wales

O Ontario

S Sweden

W Wales

V Victoria

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Supplementary Table 1: Overview of PCP sampling methods used in each jurisdiction

Country Jurisdiction Primary care

physician sampling

Number of PCPs

invited

Crude response

rate (%)

Invitation format Incentives Reminders

Australia New South

Wales

PCPs were sampled

from a commercial list

(AMPCo).

2,246 11.3 A primer letter was

sent by post. Followed

by an invitation sent by

post with a link to the

survey and login

details.

1st arm: $75 voucher

(unconditional)

2nd arm: $75 voucher

(conditional)

3rd arm: No incentive

Three reminders sent

at four, six and eight

weeks after the

primary invitation.

Victoria 2,400 7.9 1st arm: $50 voucher

(unconditional)

2nd arm: $50 voucher

(conditional)

3rd arm: No incentive

Three reminders sent

at two, four and six

weeks after the

primary invitation.

Canada British

Columbia

PCPs were sampled

from lists held by the

British Columbia

College of Family

Physicians and the

University of British

Columbia Department

of Family Practice.

Over 4,200 5.5 Email invitations Entered into a draw for

an iPad (3 to give away)

on completion of the

survey

n/a

Manitoba PCPs were sampled

from a list held by the

College of Physicians

and Surgeons of

Manitoba.

500 45.6 A primer letter was

sent by post· Followed



survey and login

details.

$10 coffee voucher sent

with the letter

Two weeks after the

primary invitation.

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physician sampling

Number of PCPs

invited

Crude response

rate (%)


Ontario PCPs were sampled

from a list held by the

College of Physicians

and Surgeons of

Ontario.

3,175 18.7 Postal invitations None Two reminders were

sent in January 2013.

Denmark PCPs were sampled

from the national PCP

organisation which

represents all

practising PCPs in

Denmark.

1,000 25.5 Postal invitations and

emails reminders

125 Danish Kroner to

PCP on completion of

the survey

Two weeks after the

primary invitation.

Norway PCPs were sampled

from the national PCP

organisation.

2,000 11.5 Postal invitations None Three reminders sent

five, 10 and 17 weeks

after the primary

invitation.

Sweden Random selection

from a public list of

GPs in the Uppsala-

Orebro and Stockholm

regions where there

are 2,700 practising

PCPs.

2,000 9.9 Postal invitations and

the first 537 also

received postal invites.

None Two reminders were

sent, one September

and another in

October 2012.

United

Kingdom

England A first tranche were

sampled from a list of

contact details from a

commercial provider.

The second tranche

4,584 5.5 Email invitations £25 to PCP or charity on

completion of the

survey

Two weeks after the

primary invitation.

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physician sampling

Number of PCPs

invited

Crude response

rate (%)


were sampled from a

commercial list of

PCPs who had

attended a training

course (GP Update).

Northern

Ireland

The first tranche were

sampled by email

invitation addressed

to Practice Managers

in each of the 353

practices in Northern

Ireland.

The second tranche

were sampled by the

sending of invitations

via surface mail to

those on a publically

available list of all GPs

working within this

jurisdiction.

1,163 11.2 Email invitations Entered into a draw for

an iPad on completion

of the survey

Two weeks after the

primary invitation.

Wales All PCPs in Wales were

sampled.

1,861 11.7 A primer letter was

sent by post. Followed



survey and login

details.

£50 voucher to PCP or

charity donation on

completion of the

survey

Two weeks after

invitation, and for the

third tranche of

invitations a second

reminder two weeks

after the first.

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Supplementary Table 2: Choice of variables with reason for selection

Variable Hypothesised Effect

PCP status PCPs in regular in-hours practice better than other status (i.e. locums, out of hours only)

Gender None

Time since qualification PCPs with 10-20 years of experience better than those with 0-10 or 20-30 years

Place of qualification

Within vs. outside jurisdiction

Within jurisdiction is better as PCPs are more familiar with the health system and referral

pathways

Sole PCP in practice Sole PCPs isolated, fewer resources and may not refer as often

More than half of registered patients rural Rurality creates increased barriers to investigation or referral

Consultation length Longer consultation length has a positive impact on referrals and investigations

Time spent on cancer education in the last year More time spent in cancer specific education is better

Access to advice on investigations Access to advice is better

Access to advice on referrals Access to advice is better

Wait for first appointment Shorter is better

Length of time from ordering test to getting result in PCP Shorter is better

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Lung vignette: Access to CXR/CT lung Access to either is better

Colorectal vignette: access to colonoscopy or abdo CT Access to either is better

Ovary vignette: access to TVUS/ US abdo/ abdo CT/pelvis CT Access to any one is better

Faster access if cancer suspected Faster access better

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Explaining variation in cancer survival between eleven

jurisdictions in the International Cancer Benchmarking

Partnership: a primary care vignette survey

Journal: BMJ Open

Manuscript ID: bmjopen-2014-007212.R1

Article Type: Research

Date Submitted by the Author: 11-Mar-2015

Complete List of Authors: Rose, Peter; University of Oxford, 2. Department of Primary Health Care Rubin, Greg; Durham University, School of Medicine and Health Perera, Rafael; University of Oxford, Primary Health Care

Almberg, Sigrun; Norwegian University of Science and Technology, Department of Cancer Research and Molecular Medicine, Faculty of Medicine Barisic, Andriana; Cancer Care Ontario, Department of Prevention and Cancer Control Dawes, Martin; University of British Columbia, Department of Family Practice Grunfeld, Eva; University of Toronto, Department of Family and Community Medicine Hart, Nigel; Queen's University Belfast, School of Medicine, Dentistry and Biomedical Sciences - Centre for Public Health Neal, Richard; Bangor University, North Wales Centre for Primary Care

Research Pirotta, Marie; University of Melbourne, General Practice and Primary Care Academic Centre Sisler, Jeff; University of Manitoba, Department of Family Medicine Konrad, Gerald; University of Manitoba, Department of Family Medicine Toftegaard, Berit; Aarhus University, Research Unit for General Practice, Department of Public Health Thulesius, Hans; Kronoberg County Research Council, Family Medicine, Department of Clinical Sciences Vedsted, Peter; Aarhus University, Research Unit for General Practice, Department of Public Health

Young, Jane; University of Sydney, Cancer Epidemiology and Services Research (CESR) Hamilton, Willie; University of Exeter Medical School, Primary Care Diagnostics ., ICBP Module 3 Working Group; ICBP Module 3 Working Group, ICBP Module 3 Working Group

<b>Primary Subject Heading</b>:

General practice / Family practice

Secondary Subject Heading: Health policy, Health services research

Keywords: HEALTH SERVICES ADMINISTRATION & MANAGEMENT, Health policy < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, International


BMJ Open on M

arch 23, 2020 by guest. Protected by copyright.

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health services < HEALTH SERVICES ADMINISTRATION & MANAGEMENT, ONCOLOGY

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Explaining variation in cancer survival between eleven jurisdictions in the International Cancer

Benchmarking Partnership: a primary care vignette survey

Corresponding author - Peter W Rose, Department of Primary Care Health Sciences, University of

Oxford, New Radcliffe House, 2nd Floor, Radcliffe Observatory Quarter, Woodstock Road, Oxford,

OX2 6GG, United Kingdom, [email protected], 07738 587 370

Greg Rubin, Professor of General Practice and Primary Care, Wolfson Research Institute, Queen's

Campus, Durham University, Stockton on Tees, TS17 6BH, United Kingdom, [email protected]

Rafael Perera-Salazar, Department of Primary Health Care Sciences, University of Oxford, New

Radcliffe House, 2nd Floor, Radcliffe Observatory Quarter, Woodstock Road, Oxford, OX2 6GG,

United Kingdom, [email protected]

Sigrun Saur Almberg, Department of Cancer Research and Molecular Medicine, Faculty of Medicine,

Norwegian University of Science and Technology (NTNU), N-7491 Trondheim, Norway,

[email protected]


Ontario, 620 University Avenue, Toronto, Ontario, M5G 2L7, Canada,

[email protected]

Martin Dawes, Head, Dept. of Family Practice, David Strangway Building, University of British

Columbia, 5950 University Boulevard, Vancouver, British Columbia, V6T 1Z3, Canada,

[email protected]


Ontario Institute for Cancer Research; Professor and Vice Chair Research, Department of Family and


Canada, [email protected]



Kingdom, [email protected]



7YP, United Kingdom, [email protected]


Department of General Practice, 200 Berkeley Street, Carlton Victoria 3053, Australia,

[email protected]

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Jeffrey Sisler, Associate Dean, Division of Continuing Professional Development and Associate

Professor, Department of Family Medicine, University of Manitoba, 727 McDermot Avenue,

Winnipeg, Manitoba, R3E 3P5, Canada, [email protected]


Tache Avenue, Winnipeg, Manitoba, Canada, [email protected]

Berit Skjødeberg Toftegaard, PhD Research Fellow Research, Unit for General Practice, Department

of Public Health, Aarhus University, Bartholins Allé 2, 8000 Aarhus C,

Denmark, [email protected]

Hans Thulesius, Associate Professor of Family Medicine, Department of Clinical Sciences, Kronoberg

County Research Council, Box 1223, 351 12 Växjö, Sweden, [email protected]


University, Bartholins Allé 2, 8000 Aarhus C, Denmark, [email protected]


Research Institute for Mothers and Infants, The University of Sydney, 2006, Australia,

[email protected]

Willie Hamilton, University of Exeter Medical School, College House, St Luke's Campus, Magdalen

Road, Exeter, EX1 2LU, United Kingdom, [email protected]

The ICBP Module 3 Working Group* (See Appendix A)

Word count: 3998

Abbreviations: International Cancer Benchmarking Partnership (ICBP), Primary care practitioners

(PCP), Positive Predictive Value (PPV)

Keywords: Survey, primary care, cancer, diagnosis, investigations,

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ABSTRACT

Objectives

The International Cancer Benchmarking Partnership (ICBP) is a collaboration between six countries

and 12 jurisdictions with similar primary care led health services. This study investigates primary care

physician behaviour and systems that may contribute to the timeliness of investigating for cancer

and subsequently international survival differences.

Design

A validated survey administered to primary care physicians (PCPs) via the internet set out in two

parts: direct questions on primary care structure and practice relating to cancer diagnosis, and

clinical vignettes, assessing management of scenarios relating to the diagnosis of lung, colorectal or

ovarian cancer.

Participants

2795 PCPs in 11 jurisdictions: New South Wales and Victoria (Australia), British Columbia, Manitoba,

Ontario (Canada), England, Northern Ireland, Wales (United Kingdom), Denmark, Norway, Sweden.

Primary and secondary outcome measures

Analysis compared the cumulative proportion of PCPs in each jurisdiction opting to investigate or

refer at each phase for each vignette with 1 year survival and conditional 5 year survival rates for the

relevant cancer and jurisdiction. Logistic regression was used to explore whether PCP characteristics

or system differences in each jurisdiction affected the readiness to investigate.

Results

Four of five vignettes showed a statistically significant correlation (p<0.05 or better) between

readiness to investigate or refer to secondary care at the first phase of each vignette and cancer

survival rates for that jurisdiction. No consistent associations were found between readiness to

investigate and selected PCP demographics, practice or health system variables.

Conclusions

We demonstrate a correlation between the readiness of PCPs to investigate symptoms indicative of

cancer and cancer survival rates, one of the first possible explanations for the variation in cancer

survival between ICBP countries. No specific health system features consistently explained these

findings. Some jurisdictions may consider lowering thresholds for PCPs to investigate for cancer –

either directly, or by specialist referral to improve outcomes.

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ARTICLE SUMMARY

Strengths and limitations of this study:

• A novel, large and logistically complicated study using a validated survey

• Data was analysed from 2795 PCPs across 11 jurisdictions

• Response rates were sub-optimal (ranging from 5.5% in England and British Columbia to

45.6% in Manitoba) and respondents were not totally representative of the PCPs in all

jurisdictions

• It is difficult to assess the effect of these weaknesses on the interpretation of results but

sensitivity analyses and the literature suggest it would not be large

INTRODUCTION

Significant differences in cancer survival have been demonstrated between countries with similar

health systems[1]. Poor outcomes may arise from late presentation, diagnostic delays and treatment

differences, or combinations of these[1-6]. There is some evidence that delay between presentation

and diagnosis (the diagnostic interval)[7] is associated with poorer outcomes[8-11] but the factors

involved are complex and the strength of the relationship is unclear . Detailed knowledge about how

the diagnostic interval is managed in health systems may explain these differences in survival.

The International Cancer Benchmarking Partnership (ICBP) is a collaboration across six countries

(Australia, Canada, Denmark, Norway, Sweden and the United Kingdom) and 11 jurisdictions of

comparable wealth and universal access to health care, established to examine international

differences in cancer outcomes and identify possible causes. Cancer survival is higher in Australia,

Canada, and Sweden, intermediate in Norway and lower in Denmark and the UK [1]. Differences

between the countries in the proportion diagnosed with the cancer at an early stage, suggest that

differences in the period prior to diagnosis contribute to the international variation in cancer

survival, along with other potential factors, such as access to treatment and the quality of

treatments[2-6].

Public awareness of signs and symptoms and beliefs about cancer appear to be quite similar across

jurisdictions and are therefore unlikely to account for much of the variation seen between countries.

However, differences in perceived barriers to seeing the GP have been reported [12]. Differences in

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the way cancer symptoms are recognised and managed in primary care may contribute to the

observed survival differences. For example, European inter-country differences in clinical diagnostic

practice have been reported for gastrointestinal disorders[13]. A stronger ‘gatekeeper’ role –

whereby primary care practitioners (PCPs) manage entry to specialist care and investigations – is

also associated with worse cancer survival[14]. This ‘gatekeeper issue’ is exemplified by the finding

that higher rates of endoscopy referrals within individual UK general practices are associated with a

lower mortality from oesophago-gastric cancer[15]. There are many system factors that will

influence a PCPs decision to act including guidelines, access to investigations, culture of

collaboration between primary and secondary care and these will all contribute to PCP

behaviour[16].

The aims of this study were to describe the readiness of PCPs to consider investigation or referral for

symptoms possibly indicative of cancer, and to relate this to international differences in primary care

structure and practice. Our hypothesis was that there is a positive correlation between the

proportion of PCPs who would investigate a specific symptom set for cancer and survival rates (for

the given cancer) across jurisdictions. We also investigated whether the readiness of PCPs to

investigate these cases could be explained by differences in primary care structure or PCP

characteristics.

METHODS

We conducted an international vignette survey amongst a sample of PCPs in participating

jurisdictions.

Survey development

We developed an online survey of PCPs exploring differences in their behaviours, attitudes,

knowledge and skills relating to cancer diagnosis. Development involved iterative discussion with

international partners at every stage of development. The overall validation was initially undertaken

in England with two rounds of validation using a cognitive interviewing technique with PCPs

following completion of the draft survey. Validation of the completed survey was tested in all

jurisdictions, particularly to ensure that translation had not altered meaning. There were two

questions relating to access to tests and internal consistency was measured by comparison of the

answers to these questions. The development and validation has been described in detail

elsewhere[17].

Structure

The survey was in two parts: direct questions consisting of demographic details of the respondents

and questions relating to service provision, access to investigations and waiting times following

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secondary care referrals; vignettes on management choices for a patient presenting with symptoms

suggestive of either lung (two vignettes), colorectal (two vignettes) or ovarian cancer (one vignette).

Respondents were randomly presented with two vignettes (of different cancer sites), and were

asked to complete the survey relating to their own practice rather than perceived best practice.

Respondents were aware the survey was part of a study linked to cancer.

Each vignette had two or three phases: phase one represented the first patient presentation; phases

two and three represented subsequent visits, where the patient’s symptoms had developed; each

phase had a pre-defined positive predictive value (PPV) for the cancer based on previous work to

ensure a defined increase in cancer risk at each phase (Table 1)[18-20]. Respondents were not

informed of the PPV for each set of symptoms and signs in the survey. However specifying the PPVs

in the analysis at each phase enabled a comparison of the readiness to act both within vignettes and

between vignettes of the same cancer. The response of primary interest was opting to identify

possible cancer either by referral to secondary care or by undertaking a definitive diagnostic

investigation in primary care: requesting either of these ended that vignette. The definitive tests

were determined by an expert panel and included chest Xray or Lung CT for lung vignettes,

colonoscopy or abdominal CT for colorectal vignettes, abdominal CT or abdominal or trans-vaginal

ultrasound for the ovarian vignette[17].

The final survey

The survey was completed in 11 jurisdictions: New South Wales and Victoria (Australia), British

Columbia, Manitoba, Ontario (Canada), England, Northern Ireland, Wales (United Kingdom),

Denmark, Norway, Sweden. All surveys were completed online.

Each jurisdiction decided on a method of sampling and approach to potential participants (by post or

email), depending on local conditions and the availability of databases with PCP contact details and

participation incentives. While variation in sampling methods and approaches might be expected to

introduce sample bias and to affect response rates, there are no observable trends that would

suggest that this is true (Supplementary Table 1).

Participants

Participants were PCPs working predominantly in clinical practice, including locums; retired PCPs,

and those in training were not eligible. Considering all jurisdictions, the online surveys were

completed between May 2012 and July 2013; the start dates and end dates in each jurisdiction

varied.

The representativeness of each sample was assessed by comparing gender, age and place of

qualification between respondents and data for all PCPs in each jurisdiction.

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All participants gave their consent for their data to be used by completing the online survey.

Approvals to conduct this study were sought from ethics committed in each jurisdiction

(Supplementary Table 2).

Sample size

Each jurisdiction aimed to recruit at least 200 respondents. This provided a 95% confidence interval

(CI) +/- 7% for equally distributed responses (e.g. 50% responding ‘yes’), and +/- 6% CI for less

equally distributed responses (e.g. 20% responding ‘yes’).

Analysis

Direct questions, relating to demographics and primary care structure factors, were analysed using

descriptive statistics. The questions relating to average waiting times for tests and results were

analysed by estimating the mean time from ordering a test to receiving the results by using the mid-

point of each waiting time category.

Analysis of the vignettes was undertaken in two stages. Our hypothesis was explored by comparing

the cumulative proportion of PCPs opting to investigate or refer at each phase for each vignette

using percentage 1 year survival rates in each jurisdiction for the relevant cancer.

Linear correlations were estimated between the proportions opting to investigate at each phase and

survival rates.

Weighted Regression

When comparing between jurisdictions, weighted linear regression was used to adjust for different

sample sizes in each jurisdiction, based on the total number of respondents for each vignette. A

regression model was fitted for each phase and each vignette using 1 year survival as the outcome

with the number of PCPs acting at each phase as a single explanatory variable. The weights were the

inverse of the variance of the proportion at a given phase for each jurisdiction. No weighted

regression models were possible for jurisdictions where all PCPs had opted to investigate at a given

phase.

Logistic Regression – Multilevel model

Weighted regression did not allow us to explore if individual PCP characteristics and access to tests

(within each jurisdiction) were associated with opting to investigate. Therefore, in the second stage

of the analysis, we fitted separate multilevel logistic regression models using opting to investigate as

the outcome and estimated the association with (a) PCP characteristics, (b) access to tests, (c)

jurisdiction level survival (1 and conditional 5 year) as reported by Coleman and colleagues [1] and

(d) a full model including PCP characteristics and access to tests. This last model only included those

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variables significantly associated in models (a) and (b) to reduce the chances of identifying spurious

associations.

We identified variables that might influence opting to investigate in models (a) and (b) as well as the

expected direction of effect (Supplementary Table 3). As with the weighted regression, analyses

were performed by vignette as explanatory variables were different for each cancer. These variables

are not independent and therefore some basic model selection (based on statistical significant

associations p-value <0.05) was used to determine the choice of variables included in model (c).

Sensitivity analyses

Previous studies comparing survival rates between England or the UK to other countries suggested

that later diagnosis could be a factor contributing to poorer outcomes: thus, opting to investigate or

refer later in the process of clinical presentation would contribute to the delay in diagnosis in poorer

performing jurisdictions[1,19]. Both 1 year survival and 5 year survival conditional on surviving at

least 1 year (conditional 5 year survival) could reflect a longer diagnostic interval due to delays,

including in primary care, but neither are a perfect measure of this[21]. We chose 1 year survival as

the primary outcome measure as we anticipated that it more directly reflects activity in primary

care. We then undertook sensitivity analysis using conditional 5 year survival to check that our

findings were also confirmed using this outcome.

Denmark has substantially changed its primary care referral procedures since the latest reported

comparative survival figures[22,23]. This change in procedures was apparent in the results with

Denmark appearing as an outlier in vignettes 3 and 4 related to the diagnosis of colorectal cancer;

analyses of these two vignettes were repeated excluding Denmark.

Australia oversampled rural PCPs to ensure the views of this minority were adequately represented.

A post hoc sensitivity analysis was undertaken to address this: we formed a data set with a sample of

rural PCPs so that this was representative of the rural/urban split in Australia and compared these

with the results of the whole data set.

Governance

At all stages the methodology, sampling and analysis were discussed with four separate working

groups: the module lead of each jurisdiction, the Programme Board overseeing the whole ICBP

programme, an academic steering group comprising the module chair and three academic PCPs with

an interest in cancer (PWR, GR, WH, PV) and an academic reference group comprising primary care

academics from within and outside ICBP jurisdictions.

RESULTS

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The online survey was completed by 2795 PCPs. Almost all jurisdictions received at least 200

responses; only the Northern Ireland response (the smallest total population) was substantially

below this target. Crude response rates (most jurisdictions stopped the survey when the sample size

was reached) varied between jurisdictions from 5.5% in England and British Columbia to 45.6% in

Manitoba (Appendix Table 1).

Characteristics of respondents are summarised in Table 2. There were significantly more female

PCPs in the samples from Victoria, Ontario and British Columbia and fewer from Norway, when

compared with their national data. The samples from England, Wales, Northern Ireland, New South

Wales, Victoria, Sweden, Norway and Ontario had fewer doctors who had qualified outside the

country and Manitoba had more (for Canadian provinces and Australian states this meant training

outside Canada and Australia respectively). Respondents from England and Norway were older

whereas respondents from New South Wales and all Canadian provinces were younger compared

with national data. Northern Ireland was included for completeness, even though their recruitment

fell below target, acknowledging that confidence intervals would be wider than anticipated.

Vignette Results

In four of the five vignettes there was a statistically significant correlation (p<0.05) between opting

to investigate for cancer in a jurisdiction at phase one and the cancer survival in that jurisdiction

(Figure 1). Only phase one results are presented; nearly all PCPs had taken action to refer or

investigate for a potential diagnosis of cancer by the end of phase 2.

Vignette 1 (lung cancer) was the only vignette that did not show any statistically significant

correlations. In this vignette, the estimated positive predictive value (PPV) for lung cancer for the

symptoms presented at phase one was 0.9% (although this was not explicitly presented in the

vignette) and yet the range of respondents opting to investigate at this phase between jurisdictions

was 40% to 80% (Table 1). The estimated PPV for lung cancer in phase one of vignette 2 was higher

at 3.6% and yet the range of respondents opting to investigate at this phase was 4% to 52%.

The lung and ovarian cancer vignettes were usually completed by the use of a test (chest X-Ray for

lung cancer, ultrasound for ovarian cancer) rather than by specialist referral. In contrast, more than

half of the colorectal vignettes were completed by referral.

Consistent with the correlation results, statistically significant associations were found using

weighted regression between the one year survival and readiness to investigate at phase one for

vignettes 2, 3, 4 (after Denmark was excluded) and 5. For the sensitivity analysis based on the

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conditional 5 year survival, this association was found at phase one for vignettes 2, 3, and 4 (after

Denmark was excluded) (Table 1).

Logistic Regression analysis

No factors (PCP characteristics, access to tests or length of time from ordering test to receiving

results) showed a consistent association with the readiness to investigate. The only two PCP

characteristics associated with the outcome were that doctors who trained outside their jurisdiction

were more likely to refer or investigate cases earlier in vignettes 3 and 4 (both colorectal) and older

doctors were more likely to refer or investigate cases earlier in vignette 4. The former association

was investigated further using data from Manitoba (the only jurisdiction to have more doctors

trained outside of the jurisdiction); within this dataset there was no association found between

place of training and readiness to investigate. The latter association was no longer statistically

significant when excluding Denmark as part of the sensitivity analysis; while training outside was still

significant (data not shown).

Similarly, adjusting for rural/urban split amongst Australian PCPs did not significantly affect the

results.

Direct questions – access to diagnostics and secondary care advice

Similarities and differences in primary care system factors are reported between jurisdictions.

Reported direct access, to blood tests for cancer diagnosis, plain X-rays and ultrasound was greater

than 70% across all jurisdictions (Table 3). Access to other tests was variable. Direct access to

endoscopy was less common in Canada. The United Kingdom and Denmark had comparatively low

levels of direct access to CT and MRI scanning.

With the exception of plain X-rays, the total wait from request to receipt of report for imaging or

endoscopy was reported to be over four weeks in most jurisdictions and over 12 weeks in some.

Total wait between a referral for a suspected cancer and a patient’s first specialist appointment was

between two and three weeks for all jurisdictions (Table 4). Most PCPs reported they could expedite

access to tests if cancer was suspected. With the exception of the United Kingdom, most PCPs

reported ready access to secondary care advice about investigation or referral of suspected cancer

from a specialist (Table 5).

While there was variation across jurisdictions in terms of access to diagnostics and secondary care

advice, none of these factors were associated with PCP readiness to act.

DISCUSSION

Principal findings

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Using an online survey in 11 jurisdictions, we have demonstrated a correlation which suggests a

relationship between the readiness of PCPs to investigate or refer for suspected cancer and cancer

survival in each jurisdiction. This is the first time that readiness to investigate for cancer – either

directly or by referral to secondary care – has been shown to correlate with cancer survival. Evidence

suggests that variations between health care systems have an impact on health outcomes[24].

There is significant variation between jurisdictions in the access that PCPs have to diagnostic tests.

Whether greater access to tests improves outcomes depends on the sensitivity of the test and how

the waiting time for test results compares with the waiting time if a referral is made. PCPs may not

be aware of the fastest way to diagnose cancer: referral or primary care investigation. Our data

indicate significantly long waits in some jurisdictions for the results of tests undertaken in primary

care. However access to tests was not associated with readiness to investigate or refer. Further

research is required in this complex area.

Strengths and weaknesses

This was a novel, large, logistically complex survey using a validated tool in 11 jurisdictions with

primary care based health systems. Once a respondent engaged in the online survey the proportion

who went on to complete it was high. The vignettes had face validity; they directly reflected clinical

practice and were universally applicable[17]. Moreover, since the study was completed, the

vignettes have been adopted as part of a GP education programme in the UK in light of their

applicability to primary care. There is evidence that using vignettes in a survey correlates well to

clinical practice[25]. Vignettes have also been used recently in a similar context[26]. While surveys

using hypothetical vignettes are not ideal we chose vignette based surveys as a cost effective way to

maintain consistency across all jurisdictions.

The readiness of PCPs to act consists of personal attributes (for example knowledge and attitudes

about cancer as well as perceptions about the role of PCPs) and system features (for example

guidelines, availability of tests/referral and waiting time for results). A multiple regression analysis

did not find a significant association with any of these factors.

This study used an ecologic outcome which makes the risk of an ecologic fallacy important. We do

not know whether the correlation with readiness and survival is causal or simply an indicator of

other factors. Therefore, this study raises the potential of an interaction between the PCP’s

readiness and the system in which they act. These results add to the science pointing towards this

important implication.

The poor response rates in some jurisdictions and the lack of representativeness of the respondents

in several jurisdictions (based on demographic data) are weaknesses. It is difficult to assess whether

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and by how much these two factors would affect the interpretation of the results. Two jurisdictions

achieved a response rate over 25%; in other jurisdictions response rates ranged from 5.5% to 18.7%.

A significant obstacle to achieving better response rates in some jurisdictions was limited availability

of comprehensive and up to date email addresses for PCPs. The response rates achieved are broadly

in line with lower response rates for online surveys generally[27]. Furthermore, response rates in

physician surveys have been declining in recent years[28].

Those responding were not wholly representative of their local PCP population, but the differences

in gender and country of qualification were bidirectional. Evidence from Australia suggests that

while respondents had more positive views about cancer compared to non-responders, the

magnitude of this difference is the same irrespective of incentives (conditional or otherwise) [29]. In

addition, respondents were aware the survey was part of a study linked to cancer for ethical

reasons; responses might have been different in a blinded study. Taken together, these biases tend

to underestimate the possible variation and our results are thus minimum estimates of the

correlation between readiness to investigate and survival. In jurisdictions where respondents were

less representative of the local PCP population, respondents were in general more likely to be

women, to have qualified in that country and to be younger. Although training outside the country

was associated with opting to act earlier in the colorectal vignettes, sensitivity analysis using

Manitoba data suggested this is unlikely to have substantially affected overall results. A systematic

review of studies of primary care referrals suggested that less than 10% of the observed variation in

referral rates could be accounted for by practice and GP characteristics[30]. It is therefore unlikely

that the minor unrepresentativeness of some samples has materially altered the findings. Other

hidden confounders may have influenced the results, but they are unlikely to have been major.

Earlier diagnosis could lead to perceived better outcomes through two mechanisms: earlier stage at

diagnosis or lead time bias. Our correlations were significant for both one year and conditional five

year survival, suggesting that lead time bias is less of an issue.

The vignettes all described hypothetical patients with symptoms which have been shown to be

significantly associated with the given cancer.

The survey was conducted in 2012/13 and therefore reflects clinical practice at this time. The latest

comparative survival data for the three cancers in participating jurisdictions is from 2007. The

jurisdictions had no major changes to cancer diagnostic pathways during this time, with the

exception of Denmark, which in 2009 introduced significant reforms to improve diagnostic access for

PCPs. Consequently, Denmark was often an outlier in the analyses: sensitivity analyses including and

excluding Denmark strengthened our findings.

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Comparison with other research

An analysis of the health systems in the ICBP jurisdictions showed few significant differences[15].

Poorer outcomes have been correlated with the strength of the ‘gatekeeping’ role of PCPs in

different health systems[13]: our findings broadly support this. Denmark has deliberately

reorganised cancer diagnostic services to reduce the gatekeeping role by enabling PCPs to undertake

timely investigation of patients with alarm well as vague symptoms[23]. Our results suggest that

Danish PCPs now behave more like PCPs in jurisdictions with better cancer outcomes. Gatekeeping

may encourage PCPs to over-use other diagnostic strategies, such as the ‘test of time’ which could

contribute to longer diagnostic intervals[31]. Other possible reasons to account for our results

include PCPs’ knowledge and PCPs’ relationships with specialists.

Implications

In this study PCPs opted to investigate at low levels of risk, possibly reflecting bias because this was a

survey relating to cancer. However, recent work suggests that patients prefer to be investigated

when cancer is a possibility, even at low risk levels[25]. If risk thresholds at which symptoms are

investigated were to be lowered, health economic considerations would need to be taken into

account. The use of risk prediction tools[32,33] may aid PCPs in this respect. Our findings also

suggested that PCPs were not necessarily aware of the positive predictive values of groups of

symptoms. Across all jurisdictions, the speed of referral was inversely related to the PPV for lung

cancer in the two lung vignettes. However, these counterintuitive responses are consistent with

referral guidelines in some of the jurisdictions. Variation in readiness to investigate or refer to

secondary care by PCPs for patients with a differential diagnosis of cancer might explain some of the

variation in cancer survival between ICBP jurisdictions. It is unlikely that a single solution to this

variation will work across all jurisdictions. However, solutions are likely to include initiatives that

empower PCPs toward earlier investigation of cancer and to reduce the barriers that inhibit

specialist referral. Such changes are likely to require changes in local policy leading to increased

access to investigations and diagnostics, more efficient referral pathways and the re-drafting of local

referral guidelines to facilitate referral at risk levels below those currently mandated.

Future research

The study supports the ecologic findings that there is a correlation between the health care system

and the way PCPs perform clinical diagnosis. Therefore, it seems appropriate to perform studies to

assess which factors affect the readiness of a PCP to investigate or refer, for example changed access

to investigations, the nature and recommendations of clinical guidelines, access to rapid diagnostics

and referral and the nature of relationships between primary and secondary care. Further studies on

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using alternate outcome measures such as stage distribution and cohort studies on survival and

mortality could provide additional insights into these factors.

Author Contribution Statement: All authors contributed to the manuscript. Peter Rose wrote the

original manuscript. All authors contributed to the study design, data collection, data interpretation,

review process; reading and considering the analysis, being involved in discussion and contributing

variously to the iterative writing and commenting process. Every author takes responsibility for the

entire content of the manuscript.

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APPENDIX A: MODULE 3 WORKING GROUP


Ontario, 620 University Avenue, Toronto, Ontario, M5G 2L7, Canada


Columbia, 5950 University Boulevard, Vancouver, British Columbia, V6T 1Z3, Canada

Diana Dawes, Research Associate, Department of Family Practice, David Strangway Building,

University of British Columbia, 5950 University Boulevard, Vancouver, British Columbia, V6T 1Z3,

Canada

Mark Elwood, Vice-President, Family and Community Oncology, BC Cancer Agency; Clinical

Professor, School of Population and Public Health, UBC; Honorary Professor, Department of

Epidemiology and Preventive Medicine, Monash University, Melbourne, Australia

Kirsty Forsdike, Senior Research Assistant, Department of General Practice, 200 Berkeley Street,

Carlton Victoria 3053, Australia


Ontario Institute for Cancer Research; Professor and Vice Chair Research Department of Family and


Canada



Kingdom

Breann Hawryluk, Project Planning Coordinator, Department of Patient Navigation, Cancer Care

Manitoba, 675 McDermot Street, Winnipeg, Manitoba, Canada


Tache Avenue, Winnipeg, Manitoba, Canada

Anne Kari Knudsen, Administrative leader, Department of Cancer Research and Molecular Medicine,

Norwegian University of Science and Technology, 7489 Trondheim

Magdalena Lagerlund, Department of Learning, Informatics, Management and Ethics, Karolinska

Institute, Berzelius väg 3, Stockholm 171 77, Sweden

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Claire McAulay, Research Officer, Public Health, School of Public Health, D02-QE11 Research

Institute for Mothers and Infants, University of Sydney NSW 2006 Australia

Jin Mou, Postdoctoral Fellow, Department of Family Practice, Research Office, Department of Family

Practice, David Strangway Building, University of British Columbia, 5950 University Boulevard,

Vancouver, British Columbia, V6T 1Z3, Canada



7YP, United Kingdom


Department of General Practice, 200 Berkeley Street, Carlton Victoria 3053, Australia

Jeffrey Sisler, Associate Dean, Division of Continuing Professional Development and Professor,

Department of Family Medicine, University of Manitoba, 727 McDermot Avenue, Winnipeg,

Manitoba, R3E 3P5, Canada

Berit Skjødeberg Toftegaard, PhD Research Fellow, Research Unit for General Practice, Department

of Public Health, Aarhus University, Bartholins Allé 2, 8000 Aarhus C, Denmark

Hans Thulesius, Associate Professor, Lund University, Box 117, SE-221 00 Lund, Sweden


University, Bartholins Allé 2, 8000 Aarhus C, Denmark

David Weller, James Mackenzie Professor of General Practice, Centre for Population Health Sciences,

University of Edinburgh, Doorway 1, Medical Quad Teviot Place, Edinburgh, EH8 9DX, United

Kingdom


Research Institute for Mothers and Infants, The University of Sydney, 2006, Australia

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ACKNOWLEDGEMENTS

Kate Aldersey, Martine Bomb and Catherine Foot of Cancer Research UK for managing the ICBP

programme, along with Brad Groves and Samantha Harrison who have been key to bringing about

the development of this paper. John Archibald at Sigmer Technologies Ltd for hosting the online

survey. Alice Fuller for help with data management. We would also like to acknowledge and thank

our ICBP clinical committee members and working group members in each jurisdiction who were not

part of the central team, but who contributed to the review of our results and this paper.

Programme Board: Ole Andersen (Danish Health and Medicines Authority, Copenhagen, Denmark),

Søren Brostrøm (Danish Health and Medicines Authority, Copenhagen, Denmark), Heather Bryant

(Canadian Partnership Against Cancer, Toronto, Canada), David Currow (Cancer Institute New South

Wales, Sydney, Australia), Dhali Dhaliwal (Cancer Care Manitoba, Winnipeg, Canada), Anna Gavin

(Northern Ireland Cancer Registry, Queens University, Belfast, UK), Gunilla Gunnarsson (Swedish

Association of Local Authorities and Regions, Stockholm, Sweden), Jane Hanson (Welsh Cancer

National Specialist Advisory Group, Public Health Wales, Cardiff, UK), Todd Harper (Cancer Council

Victoria, Carlton, Australia), Stein Kaasa (University Hospital of Trondheim, Trondheim, Norway),

Nicola Quin (Cancer Council Victoria, Carlton, Australia), Linda Rabeneck (Cancer Care Ontario,

Toronto, Canada), Michael A Richards (Care Quality Commission, London, UK), Michael Sherar

(Cancer Care Ontario, Toronto, Canada), Robert Thomas (Department of Health Victoria, Melbourne,

Australia).

Academic Reference Group:

Jon Emery, Professor of Primary Care Cancer Research, University of Melbourne and Clinical

Professor of General Practice, University of Western Australia, Australia

Niek de Wit, Professor of General Practice, Julius Centre for Health Sciences and Primary Care,

University Medical Centre, Utrecht, Netherlands

Roger Jones, Editor, British Journal of General Practice and Emeritus Professor of General Practice,

King's College, London, United Kingdom

Jean Muris, Associate Professor in Family Medicine, Maastricht University, Netherlands

Frede Olesen, Professor, Research Unit for General Practice, Department of Public Health, University

of Aarhus, Denmark

Funding: This work was supported by Canadian Partnership Against Cancer; Cancer Care Manitoba;

Cancer Care Ontario; Cancer Council Victoria; Cancer Institute New South Wales; Danish Health and

Medicines Authority; Danish Cancer Society; Department of Health, England; Department of Health,

Victoria; Northern Ireland Cancer Registry; The Public Health Agency, Northern Ireland; Norwegian

Directorate of Health; South Wales Cancer Network; Swedish Association for Local Authorities and

Regions; Tenovus; British Columbia Cancer Agency; Public Health Wales and the Welsh Government

Competing Interests: WH is the clinical lead for the ongoing revision of the NICE 2005 guidance on

investigation of possible cancer, CG27. His contribution to this article is in a personal capacity, and is

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not to be interpreted as representing the view of the Guideline Development Group, or of NICE

itself. The authors declared no conflicts of interest.

Contributorship

PWR, GR, RPS, SSA, AB, MD, EG, NH, RDN, MP, JS, GK, BST, HT, JY, WH and the ICBP Module 3

Working Group contributed to the manuscript. PWR wrote the original manuscript. PWR, GR, RPS,

SSA, AB, MD, EG, NH, RDN, MP, JS, GK, BST, HT, JY, WH and the ICBP Module 3 Working Group

contributed to the study design, data collection, data interpretation, review process; reading and

considering the analysis, being involved in discussion and contributing variously to the iterative

writing and commenting process. Every author takes responsibility for the entire content of the

manuscript.

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mortality with longer diagnostic intervals for five common cancers: A cohort study in primary

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Benchmarking Partnership): do they contribute to differences in cancer survival? British

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Table 1: Summary of the vignettes

Vignette

Cancer

Patient details




Definitive

actions


Test (%) *

PPV Refer /

Test (%)*

1 year

survival

P value

Conditional 5 year

survival

P value

1 Lung Phase 1 68-year old female, ex-smoker with persistent cough for 3

weeks but no other symptoms, taking ramipril for

hypertension. Ear, throat and chest exams were normal.

Secondary care

referral

Chest x-ray

Chest CT

• Antibiotics

• Oral steroids


• Stop ramipril


try remedies there



0.9 40-80 3·9 95-100 0.654 0.647

Phase 2 Patient returns after another 3 weeks, saying cough has

persisted and now there are streaks of blood in the sputum.

No weight loss, but a chest examination reveals some

crepitations at the left base. Any tests previously undertaken

were normal.

0.357

(excluding

Denmark)

0.911

(excluding

Denmark)

Phase 3 Patient returns with ongoing symptoms and you decide to

order a chest X-ray. The report says there is mild

cardiomegaly but the lung fields are clear.

2 Lung Phase 1 62 years old man with COPD, a heavy smoker for over 40

years. He presented with respiratory symptoms.

Secondary care

referral

Chest x-ray

Chest CT

• Advise increased use of

salbutamol inhaler

• Antibiotics

• Oral steroids

• Antibiotics and add new

inhaler- steroid or

salmeterol



try remedies there



3.6 5-50 >10·0 87-100 <0.001 <0.001

Phase 2 Patient returns in 3 weeks, complains of constant ache in left

shoulder. Patient attributes pain to persistent cough; he is

also producing grey coloured sputum in larger quantities

than usual, but no other chest symptoms. No weight loss. On

exam he has still has a bilateral upper lobe wheeze and some

crepitations at the left base. Examination of his shoulder is

normal.

<0.001

(excluding

Denmark)

<0.001

(excluding

Denmark)

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Vignette

Cancer

Patient details




Definitive

actions


Test (%) *

PPV Refer /

Test (%)*

1 year

survival

P value

Conditional 5 year

survival

P value

3 Colorectal Phase 1 43 year old woman with IBS for more than 10 years, but the

IBS has got worse recently. She has abdominal pain every

day, unchanged bowel habit and no other symptoms. She

has no family history of cancer.

Secondary care

referral

Colonoscopy

Abdominal CT

• Prescribe medication for

IBS

• Give dietary advice

• Offer psychological

therapies (counselling and

CBT)



0.7 5-45 1.2 48-89 0.014

0.025

Phase 2 The patient returns to see you. Her recent blood test has

returned a haemoglobin level of 10.5g/dl.

0.003

(excluding

Denmark)

0.002

(excluding

Denmark)

4** Colorectal Phase 1 68 year old man with no relevant medical history. He has

experienced loose stools twice a day, most days for over 4

weeks. He has no other symptoms. Examination incl. rectal

exam was normal.

Secondary care

referral

Colonoscopy

Abdominal CT

• Offer medication e.g.

loperamide, antispasmodic,

analgesia.

• Advice on diet



0.9 20-40 1.9 77-89 0.071

0.093

Phase 2 Any tests selected are negative. Patient returns 2 weeks

later, describing that the diarrhoea remains much the same

but he now also has intermittent sharp abdominal pain.

Abdominal and PR examinations are normal.

0.004

(excluding

Denmark)

0.001

(excluding

Denmark)

Phase 3 All tests are negative. A further two weeks later patient

describes two brief episodes of rectal bleeding (bright red)

two days apart.

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Vignette

Cancer

Patient details




Definitive

actions


Test (%) *

PPV Refer /

Test (%)*

1 year

survival

P value

Conditional 5 year

survival

P value

5** Ovarian Phase 1 53 year old woman whose last period was 6 months ago. She

had experienced abdominal pain for the last 3 weeks. She

has had no other symptoms and the same sexual partner for

20 years.

Secondary care

referral

Abdominal

ultrasound

Pelvic CT

• Prescribe analgesia

• Prescribe anti-spasmodic

• Undertake investigations

now



0.3 40-75 0.7 68-90 0·007

0.610

Phase 2 All investigations to date have been normal. The patient

presents one month later with urinary frequency. She says

the abdominal pain is still present but comes less often.

Abdominal examination is normal. A urine dipstick for blood,

protein, nitrite, white cells and sugar is negative.

0.009

(excluding

Denmark)

0.744

(excluding

Denmark)

Phase 3 Patient returns 6 weeks later saying pain is worse, she is

passing urine every 3 hours, day and night and has noticed

that her abdomen seems swollen. You examine her abdomen

and it does looks distended but you cannot feel any other

abnormality.

* Range of respondent who completed the vignette at this stage by referral or undertaking a definitive diagnostic test.

** Stage 3 results not reported as nearly 100% of respondents referred or undertook definitive test by this stage

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Table 2: Representativeness of samples: comparison of respondent characteristics with whole jurisdiction data

Sub-categories ENG WA NI VIC NSW SWE NO DK ONT MAN BC

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al*

Su

rve

y

p v

alu

e

Na

tion

al*

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

Na

tion

al

Su

rve

y

p v

alu

e

N 35527 251 2015 218 1178 130 20360 189 20360 256 5467 199 5373 230 3590 255 12296 610 1323 228 5833 229

(%)

(%) (%) (%) (%) (%) (%) (%) (%) (%) (%)

Male 52.9 41.8

0.1

98

56.0 61.0 0.1

98

0

55.0 56.0 0.8

01

8

61.0 53.0 0.0

03

4

61.0 56.0 0.0

83

9

54.0 53.0 0.8

38

4

58.3 66.5 0.0

13

2

56.4 57.3 0.7

90

2

57.6 51.6 0.0

03

8

62.6 59.2 0.3

32

8

60.6

45.0

<0

.00

01

Female 47.1 58.2 44.0 39.0 45.0 44.0 39.0 47.0 39.0 44.0 46.0 47.0 41.7 33.5 43.6 42.7 42.4 48.4 37.4 40.8 39.4

55.0

Place of

Qualification

Within

jurisdiction

≠77.4 91.2

0.0

00

4

82.0 89.0

0.0

09

6

≠77.4 100.0

<0

.00

01

66.0 74.0

0.0

02

9

66.0 74.0

0.0

08

6

2010:

77.0

89.0

<0

.00

01

61.6 74.8

<0

.00

01

not

available

98.4

74.6 90.1 <

0.0

00

1

53.1 48.7

<0

.00

01

not

available

72.9

Outside

jurisdiction

≠22.6

8.8

18.0 11.0

≠22.6

0.0

34.0

26.0

34.0 26.0

2010:

23.0

11.0

38.4 25.2

1.6

24.7 9.9

46.9 51.3

27.1

Age Bands Under 30 1.0 0.4

0.0

13

1.0 0.0

0.1

27

7

0.1 0.80

0.4

72

<35:

7.0

6.0

0.0

86

4

<35:

7.0

10.0

0.0

46

9

<40®:

7.0

33.0

<0

.00

01

4.6 0.0

<0

.00

01

<34:

0.11

0.4

0.6

52

5

1.7 14.0

<0

.00

01

4.7 7.9

<0

.00

01

<30

1.2 17.9

<0

.00

01

30-44 42.0 14.7 39.0 39.9 40.0 36.9 35-

44®:

20.0

24.0 35-44®:

20.0

24.0 35-

44®:

10.0

9.0 43.3 30.9 35-44:

20.1

18.8 32.2 26.1 31-45®:

33.2

37.3 30-39®:

18.9

21.0

45-54 34.4 13.2 37.0 39.4 35.0 39.2 31.0 36.0 31.0 28.0 28.0 25.0 21.2 19.6 29.2 29.0 28.0 27.8 46-55®:

30.1

33.8 40-49®:

24.4 21.8

55-64 18.4 12.4 20.0 20.2 23.0 20.8 55+:

42.0

34.0 55+®:

42.0

38.0 43.0 26.0 25.5 40.9 40.8 40.4 24.7 23.6 56-64®:

20.6

17.1 50-59®:

29.9 26.6

65+ 4.0 17.9 3.0 0.5 1.9 2.30 12.0 8.0 5.5 8.7 9.6 11.4 13.4 8.5 9.4 3.95 60-69®:

20.7 10.5

unknown 0.1 17.9

70-79®:

4.4 1.3

80+®:

0.6 0.9

Key

®Where age groups sub-groups differ they are marked in bold and italic

*using Australian National statistics

≠ UK na\onal figures used

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Table 3: Direct access* to investigations (%)


NSW Victoria

British


Northern

Ireland Wales

Cancer diagnosis blood tests #

Blood tests 98.0 99.5 81.7 69.3 80.7 89.8 70.9 75.8 94.0 89.0 75.7


Endoscopy

Upper GI endoscopy 26.0 66.1 7.4 13.7 19.5 56.5 18.0 46.2 68.1 68.5 66.1


Flexi sig 17.7 34.9 13.1 13.2 17.7 54.9 16.2 34.2 40.6 14.8 32.3


Colonoscopy 26.4 61.9 7.9 13.2 22.4 52.5 17.1 45.2 33.1 19.8 22.0


Imaging

Xray Whole body^ 99.2 100.0 96.1 92.5 98.0 92.2 74.3 86.4 82.5 89.9 87.6


CT Whole body 99.6 100.0 92.6 86·4 95.1 22.0 73.5 84.3 21.5 27.5 46.3

95%CI 97.5 to 100 97.5 to 100 88.2 to 95.5 81.1 to 90.4 93 to 96.7 17.1 to 27.7 67.2 to 79.0 78.4 to 89.0 16.7 to 27.2 19.6 to 37.0 39.6 to 53.2

MRI Whole body 44.9 54.0 62.0 74·6 91.6 16.9 70.4 68.2 19.9 11.0 31.2

95%CI 38.7 to 51.2 46.6 to 61.2 55.4 to 68.3 68.3 to 80.0 89 to 93.6 12.6 to 22.2 64.0 to 76.2 61.1 to 74.5 15.3 to 25.5 6.1 to 18.8 25.2 to 37.9

Ultrasound Whole body 98.0 98.9 93.0 84·2 95.4 78.2 70.9 82.3 78.1 79.8 71.1


* Direct access: PCP can order the test without specific referral to secondary care

# Survey did not define which specific tests

^ Access to all individual body parts

Note: Exact 95%CI calculated for these figures

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Table 4: Average wait times for tests and results (weeks)


NSW Victoria

British


Northern

Ireland Wales

X-ray

Test 0.56 0.57 0.56 0.55 0.54 0.95 1.37 1.43 0.79 0.91 0.82

Result 0.50 0.51 0.71 0.68 0.57 0.79 0.69 0.67 1.03 1.36 1.28

Total wait 1.06 1.08 1.27 1.23 1.11 1.74 2.06 2.10 1.82 2.27 2.10


CT

Test 0.81 0.82 4·29 4·13 3·01 2.65 3.30 4.07 3.50 5.55 5.38

Result 0.52 0.52 1·02 0·96 0·78 0.98 0.85 1.02 1.39 1.77 1.44

Total wait 1.33 1.34 5·31 5·09 3·79 3.63 4.15 5.09 4.89 7.32 6.82

95%CI 1.24 to 1.42 1.24 to 1.44 4·87 to 5·75 4·69 to 5·49 3·59 to 3·68 3.33 to 3.93 3.88 to 4.43 4·60 to 5.57 4.60 to 5.18 6.57 to 8.07 6.35 to 7.29

MRI

Test 2.39 2.76 12.36 9.10 6.05 5.06 6·13 6.16 4.73 9.04 8.37

Result 0.60 0.56 1.39 1.36 0.88 1.12 1·05 1.24 1.52 2.55 1.56

Total wait 2.99 3.32 13.75 10.46 6.93 6.18 7·18 7.40 6.25 11.60 9.93

95%CI 2.64 to 3.34 2.84 to 3.80 13.12 to 14.38 9.82 to 11.09 6.61 to 7.25 5.66 to 6.69 6·72 to 7·63 6·73 to 8·06 5.90 to 6.60 10.63 to 12.57 8.32 to 30.55

Ultrasound

Test 1.11 1.26 4.30 5.88 1.80 2.71 3.99 3.76 3.73 6.38 6.08

Result 0.52 0.53 0.88 1.04 0.65 0.84 0.78 0.93 1.19 1.62 1.31

Total wait 1.63 1.79 5.18 6.92 2.46 3.55 4.77 4.69 4.93 8.00 7.39

95%CI 1.50 to 1.76 1.56 to 2.02 4.71 to 5.66 6.36 to 7.48 2.32 to 2.59 3.23 to 3.88 4.39 to 5.14 4.25 to 5·13 4.64 to 5.21 7.35 to 8.66 6.90 to 7.88

Upper GI endoscopy

Test 5.56 5·11 9.05 9·35 6·01 2·45 5.95 4.71 3.99 8.37 8.17

Result 1.38 0·83 1.49 1·82 1·36 0·77 0.95 1.46 1.35 1.58 1.67

Total wait 6.94 5·94 10.54 11·17 7·37 3·22 6.90 6.17 5.34 9.95 9.84


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NSW Victoria

British


Northern

Ireland Wales

Flexi sigmoidoscopy

Test 5.26 5.06 9.19 9.01 5.79 2.39 6·28 5·55 4·15 8·21 8.20

Result 1.38 0.87 1.55 1.91 1.34 0.76 0·94 1·54 1·46 2·04 1.66

Total wait 6.64 5.93 10.74 10.91 7.14 3.15 7·22 7·09 5·61 10·25 9.86

95%CI 6.06 to 7.22 5.21 to 6.65 10.03 to 11.44 10.20 to 11.63 6.75 to 7.48 2.89 to 3.41 6·76 to 7·65 6·53 to 7·65 5·26 to 5·95 9·35 to 11·15 9.21 to 10.50

Colonoscopy

Test 5.78 5.36 10.48 10.16 6.70 2.51 6.69 6.25 4.15 8.69 9.06

Result 1.38 0.84 9.61 1.91 1.37 0.78 0.98 1.54 1.56 2.00 1.70

Total wait 7.16 6.20 20.09 12.07 8.08 3.29 7.67 7.79 5.71 10.69 10.76


Average wait time between a referral and first specialist appointment (Days)

Not available Not available 15.44 19.21 15.05 4.90 13.70 14.50 10.09 13.53 18.05

95%CI Not available Not available 14.10 to 16.78 17.56 to 20.87 14.25 to 15.85 4.78 to 5.32 12.72 to 14.68 13.32 to 15.68 9.91 to 10.28 12.62 to 14.44 16.75 to 19.35

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Table 5: Access to advice and faster tests (%)


NSW Victoria

British


Northern

Ireland Wales

% agree /

strongly

agree

Can get

specialist

advice within

48 hours

Investigations 67.4 61.1 67.7 47.8 51.1 80.4 81.8 84.4 31.8 27.6 28.4


Referrals 59.5 64.3 62.5 45.2 44.2 80.7 73.9 79.8 35.8 27.5 25.7


Can arrange

faster access

to tests, if

suspicious

87.4 84.7 53.3 64·5 75.5 92.5 82.6 78.8 66.2 70.7 56.0


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Scatterplots of vignettes and multiple regression analysis 90x127mm (300 x 300 DPI)

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Supplementary Table 1: Overview of PCP sampling methods used in each jurisdiction

Country Jurisdiction Primary care physician sampling

Number of PCPs invited

Crude response rate (%)


Australia New South Wales

PCPs were sampled from a commercial list (AMPCo).

2,246 11.3 A primer letter was sent by post. Followed by an invitation sent by post with a link to the survey and login details.

1st arm: $75 voucher (unconditional) 2nd arm: $75 voucher (conditional) 3rd arm: No incentive

Three reminders sent at four, six and eight weeks after the primary invitation.

Victoria 2,400 7.9 1st arm: $50 voucher (unconditional) 2nd arm: $50 voucher (conditional) 3rd arm: No incentive

Three reminders sent at two, four and six weeks after the primary invitation.

Canada British Columbia

PCPs were sampled from lists held by the British Columbia College of Family Physicians and the University of British Columbia Department of Family Practice.

Over 4,200 5.5 Email invitations Entered into a draw for an iPad (3 to give away) on completion of the survey

n/a

Manitoba PCPs were sampled from a list held by the College of Physicians and Surgeons of Manitoba.

500 45.6 A primer letter was sent by post· Followed by an invitation sent by post with a link to the survey and login details.

$10 coffee voucher sent with the letter

Two weeks after the primary invitation.

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Ontario PCPs were sampled from a list held by the College of Physicians and Surgeons of Ontario.


sent in January 2013.

Denmark PCPs were sampled from the national PCP organisation which represents all practising PCPs in Denmark.

1,000 25.5 Postal invitations and emails reminders

125 Danish Kroner to PCP on completion of the survey


Norway PCPs were sampled from the national PCP organisation.

2,000 11.5 Postal invitations None Three reminders sent five, 10 and 17 weeks after the primary invitation.

Sweden Random selection from a public list of GPs in the Uppsala-Orebro and Stockholm regions where there are 2,700 practising PCPs.


sent, one September

and another in October

2012.

United Kingdom

England A first tranche were sampled from a list of contact details from a commercial provider. The second tranche were sampled from a commercial list of PCPs

4,584 5.5 Email invitations £25 to PCP or charity on completion of the survey


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who had attended a training course (GP Update).

Northern Ireland

The first tranche were

sampled by email

invitation addressed to

Practice Managers in

each of the 353

practices in Northern

Ireland.

The second tranche

were sampled by the

sending of invitations

via surface mail to

those on a publically

available list of all GPs

working within this

jurisdiction.

1,163 11.2 Email invitations Entered into a draw for

an iPad on completion of

the survey

Two weeks after the

primary invitation.

Wales All PCPs in Wales were sampled.

1,861 11.7 A primer letter was sent by post. Followed by an invitation sent by post with a link to the survey and login details.

£50 voucher to PCP or charity donation on completion of the survey

Two weeks after invitation, and for the third tranche of invitations a second reminder two weeks after the first.

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Supplementary Table 2: Details of ethics approvals in all jurisdictions

The table below sets out the details of ethical approvals received in all participating ICBP

jurisdictions.

Jurisdiction Ethics Board Reference number

Denmark Not required

Not required

Sweden Regionala etikprovningsnamnden i Linkkoping

EPN 2011:495/31

Victoria Human Research Ethics Committee at the

University of Melbourne

1238452.1

NSW Sydney Local Health District Ethics Review

Committee (RPAH zone)

X12-0230 and

HREC/12/RPAH/364

Norway Norwegian Social Science Data Services (NSD) 32176

Manitoba University of Manitoba Health Research Ethics Board

H2012:108

CancerCare Manitoba Research Resource Impact Committee

RRIC #20-2012

Ontario University of Toronto Research Ethics Board

27880

British Columbia University of British Columbia Behavioural Research Ethics Board

H11-02708

England National Research Ethics Service Committee South Central

11/SC/0373

Northern Ireland

Wales

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Supplementary Table 3: Choice of variables with reason for selection


PCP status PCPs in regular in-hours practice better than other status (i.e. locums, out of hours only)

Gender None

Time since qualification PCPs with 10-20 years of experience better than those with 0-10 or 20-30 years

Place of qualification

Within vs. outside jurisdiction

Within jurisdiction is better as PCPs are more familiar with the health system and referral

pathways

Sole PCP in practice Sole PCPs isolated, fewer resources and may not refer as often

More than half of registered patients rural Rurality creates increased barriers to investigation or referral

Consultation length Longer consultation length has a positive impact on referrals and investigations

Time spent on cancer education in the last year More time spent in cancer specific education is better

Access to advice on investigations Access to advice is better

Access to advice on referrals Access to advice is better

Wait for first appointment Shorter is better

Length of time from ordering test to getting result in PCP Shorter is better

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Lung vignette: Access to CXR/CT lung Access to either is better

Colorectal vignette: access to colonoscopy or abdo CT Access to either is better

Ovary vignette: access to TVUS/ US abdo/ abdo CT/pelvis CT Access to any one is better

Faster access if cancer suspected Faster access better

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bmj open · eva grunfeld, director, knowledge translation research network health services research...

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